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How To Properly Insure Your Accessible Wheelchair Van

Everyone understands that it’s a legal requirement to have their vehicles insured and recognizes the value of being properly insured in case of an accident. But, most people are not insurance experts. In fact, some aspects of vehicle insurance confuse many people.


In order to keep your accessible van as safe as you can make sure you’re protecting it with the right types of commercial auto insurance. Here are the primary types of insurance you’ll need:

Liability Insurance

Liability insurance is normally required by law in all parts of the United States. This coverage is designed to protect other people from suffering losses that are caused when your wheelchair van causes an auto accident. Liability insurance primarily focuses on two coverage areas: Bodily injuries and Property Damages.

  • Bodily Injury – This section of your liability insurance policy helps pay for any injuries inflicted on other people from an auto accident. If your mobility van causes, or is found to be at fault for, an auto accident that causes people to get physically hurt, the bodily injury portion of your coverage pays for their medical expenses. When an injured person must be transported to the hospital for example, your bodily injury coverage can pay for the ambulatory bills and expenses. It also pays for the emergency room care, doctor’s visits, prescription medications, physical therapy, rehabilitation and other medical bills that are caused due to the auto accident. Bodily injury also pays for a person’s lost wages when they must miss work due to recovery times, and it pays for pain and suffering of the victims. When a person is killed in an auto accident, your bodily injury insurance can pay their funeral expenses as well.
  • Property Damage – When a vehicle or other property sustains damages from an auto accident that was caused by your handicap van, the property damages portion of your liability insurance will pay for the cost of repairs.

Liability insurance can provide your wheelchair van with protection at varying levels, based on the amount of coverage you select. You can choose a standard split level policy or a combined single limit policy as well.

A split limit policy sets maximum benefit limits on two separate portions of an auto accident claim. Split limit policies will pay no more than the set limit per person for bodily injuries but no more than the total combined limit for all bodily injuries in an accident. It will also pay a separate maximum for property damages. Example: A liability split limit policy of $15,000/$50,000/$35,000 explains a specific payment maximum per accident. No more than $15,000 will be paid for any individual person’s bodily injuries in one accident; no more than $50,000 will be paid for the combined total of bodily injuries; and $35,000 is the maximum amount the policy will pay for property damages.

If you elect a single combined limit liability policy instead, there is no separate maximum limit defined for bodily injuries or property damages. There is just one maximum overall payout for the policy for each accident. A $50,000 combined single limit liability policy for example, would pay a maximum of $50,000 in damages per accident regardless of whether the damages were to people or property.

Medical Payments

Medical payments insurance is important coverage for a wheelchair van, because it pays medical related expenses that arise for your van driver and any passengers who were riding in the vehicle at the time of the accident. Coverage is for paying medical and related bills, such as ambulance transport, hospital care and follow up treatments. This insurance protects your driver and passengers without regard to who causes an auto accident. It is not available in all areas however, so be sure to contact one of your licensed representatives to determine if it’s an option for your policy.

Physical Damage Insurance

Physical damages insurance protects your wheelchair accessible vehicle itself. And it protects your you from having to pay the bills when the van is damaged or destroyed. This insurance is extremely important for you  if you still have an outstanding unpaid finance loan because it provides you with the most protection possible. There are three types of physical damages insurance protection:

  • Comprehensive Physical Damage Protection – Comprehensive damages protects you from a number of potential risks, perils and hazards. It does not protect against damages and losses caused by a collision or caused when your van overturns. It does however, protect against losses and damages caused by theft, break ins, vandalism and natural events. If your van is damaged due to a tree falling on it in a storm for example, your comprehensive damage protection coverage will pay for the repairs.
  • Collision Protection – Collision protection is specifically designed to pay for damages and destruction that are caused by a collision or by a roll over event. If your van has a blowout and overturns for example, your collision damage protection will pay for the repairs. If the van backs into a building while trying to access a wheelchair ramp, the collision damage protection pays for those repairs as well.
  • Specified Peril (CAC) – Pecified Peril coverage is also known as Fire and Theft with Combined Additional Coverage. This does not protect you against collision or roll over events. Instead, it protects you from just those perils that are specified on your insurance policy.

Uninsured or Underinsured Motorist

If your van is involved in an auto accident with another vehicle and that other vehicle was the cause for the accident, their liability insurance is supposed to pay for your bodily injuries and property damages. If the other driver does not carry insurance however, or if they do not carry enough coverage to pay all of the resulting bills, they are considered uninsured or underinsured. You can purchase protection against these risks with an uninsured or underinsured motorist policy. When the other driver is at fault but unable to pay for all of your damages, your policy will pick up the difference. This policy works much like your Liability policy.

  • Bodily Injury – As covered with Liability Insurance.
  • Property Damage – As covered with Liability Insurance.
  • Collision Deductible Waiver (CDW) – When you carry an uninsured or underinsured motorist bodily injury policy on your wheelchair van, you can qualify for a collision deductible waiver (CDW). The CDW makes it so that you do not have to pay your standard insurance deductible when you make an uninsured or underinsured motorist accident claim.

Other Important Commercial Auto Insurance for Wheelchair Vans

  • Special Equipment Coverage – This type of coverage covers every aspect of vehicle adaptation including mobility equipment such as a lift, ramp, lowered floor, kneeling systems, a lock-down system, or any other added adaptive driving equipment (hand controls and left foot accelerators).
  • Rental – If your van is unusable due to an auto accident, rental insurance can pay for the cost of a temporary replacement.
  • Towing – Towing insurance pays for the cost of towing your accessible vehicle from the scene of an accident when it is badly damaged.
  • Accessories – Accessories insurance protects you from losses associated with extra devices you may have installed on your van. A wheelchair van taxi may have a mileage meter installed for example, and a communications radio to keep them in contact with their dispatcher.

** The limits of your coverage and your deductibles for each element of your policy will vary based upon what you’ve purchased from your insurance company.

April is Parkinson’s Awareness Month

Parkinson's Awareness

Parkinson’s disease is a movement disorder that is chronic and progressive, meaning that symptoms continue and worsen over time.

As many as one million individuals in the US live with Parkinson’s disease. While approximately four percent of people with Parkinson’s are diagnosed before the age of 50, incidence increases with age.

Its major symptoms vary from person to person, but can include tremor, slowness of movements, limb stiffness, and difficulties with gait and balance. The cause of the disease is unknown, and although there is presently no cure, there are treatment options such as medication and surgery to manage the symptoms.

If you have questions about wheelchair accessible vehicles and are in the New England area give us a call @ 508-697-6006

 

Autism Awareness Month

Autism spectrum disorders (ASDs) are a group of developmental disabilities that can cause significant social, communication and behavioral challenges.

ASDs are “spectrum disorders” which means ASDs affect each person in different ways, and can range from very mild to severe. People with ASDs share some similar symptoms, such as problems with social interaction. But there are differences in when the symptoms start, how severe they are, and the exact nature of the symptoms.


Types of ASDs
There are three different types of ASDs:

  • Autistic Disorder (also called “classic” autism)
    This is what most people think of when hearing the word “autism.” People with autistic disorder usually have significant language delays, social and communication challenges, and unusual behaviors and interests. Many people with autistic disorder also have intellectual disability.
  • Asperger Syndrome
    People with Asperger syndrome usually have some milder symptoms of autistic disorder. They might have social challenges and unusual behaviors and interests. However, they typically do not have problems with language or intellectual disability.
  • Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS; also called “atypical autism”)
    People who meet some of the criteria for autistic disorder or Asperger syndrome, but not all, may be diagnosed with PDD-NOS. People with PDD-NOS usually have fewer and milder symptoms than those with autistic disorder. The symptoms might cause only social and communication challenges.


Signs and Symptoms
ASDs begin before the age of 3 and last throughout a person’s life, although symptoms may improve over time. Some children with an ASD show hints of future problems within the first few months of life. In others, symptoms might not show up until 24 months or later. Some children with an ASD seem to develop normally until around 18 to 24 months of age and then they stop gaining new skills, or they lose the skills they once had.

A person with an ASD might:

  • Not respond to their name by 12 months
  • Not point at objects to show interest (point at an airplane flying over) by 14 months
  • Not play “pretend” games (pretend to “feed” a doll) by 18 months
  • Avoid eye contact and want to be alone
  • Have trouble understanding other people’s feelings or talking about their own feelings
  • Have delayed speech and language skills
  • Repeat words or phrases over and over (echolalia)
  • Give unrelated answers to questions
  • Get upset by minor changes
  • Have obsessive interests
  • Flap their hands, rock their body, or spin in circles
  • Have unusual reactions to the way things sound, smell, taste, look, or feel


Diagnosis
Diagnosing ASDs can be difficult since there is no medical test, like a blood test, to diagnose the disorders. Doctors look at the child’s behavior and development to make a diagnosis.

ASDs can sometimes be detected at 18 months or younger. By age 2, a diagnosis by an experienced professional can be considered very reliable. However, many children do not receive a final diagnosis until much older. This delay means that children with an ASD might not get the help they need.


Treatment
There is currently no cure for ASDs. However, research shows that early intervention treatment services can greatly improve a child’s development. Early intervention services help children from birth to 3 years old (36 months) learn important skills. Services can include therapy to help the child talk, walk, and interact with others. Therefore, it is important to talk to your child’s doctor as soon as possible if you think your child has an ASD or other developmental problem.

Even if your child has not been diagnosed with an ASD, he or she may be eligible for early intervention treatment services. The Individuals with Disabilities Education Act (IDEA) says that children under the age of 3 years (36 months) who are at risk of having developmental delays may be eligible for services. These services are provided through an early intervention system in your state. Through this system, you can ask for an evaluation.

In addition, treatment for particular symptoms, such as speech therapy for language delays, often does not need to wait for a formal ASD diagnosis.

Learn about types of treatments »


Causes and Risk Factors
We do not know all of the causes of ASDs. However, we have learned that there are likely many causes for multiple types of ASDs. There may be many different factors that make a child more likely to have an ASD, including environmental, biologic and genetic factors.

  • Most scientists agree that genes are one of the risk factors that can make a person more likely to develop an ASD.
  • Children who have a sibling or parent with an ASD are at a higher risk of also having an ASD.
  • ASDs tend to occur more often in people who have certain other medical conditions. About 10% of children with an ASD have an identifiable genetic disorder, such as Fragile X syndrome, tuberous sclerosis, Down syndrome and other chromosomal disorders.
  • Some harmful drugs taken during pregnancy have been linked with a higher risk of ASDs, for example, the prescription drugs thalidomide and valproic acid.
  • We know that the once common belief that poor parenting practices cause ASDs is not true.
  • There is some evidence that the critical period for developing ASDs occurs before birth. However, concerns about vaccines and infections have led researchers to consider risk factors before and after birth.

ASDs are an urgent public health concern. Just like the many families affected in some way by ASDs, CDC wants to find out what causes the disorder. Understanding the risk factors that make a person more likely to develop an ASD will help us learn more about the causes. We are currently working on one of the largest U.S. studies to date, called Study to Explore Early Development (SEED). SEED is looking at many possible risk factors for ASDs, including genetic, environmental, pregnancy, and behavioral factors.


Who is Affected
ASDs occur in all racial, ethnic, and socioeconomic groups, but are almost five times more common among boys than among girls. CDC estimates that about 1 in 88 children has been identified with an autism spectrum disorder (ASD).

More people than ever before are being diagnosed with an ASD. It is unclear exactly how much of this increase is due to a broader definition of ASDs and better efforts in diagnosis. However, a true increase in the number of people with an ASD cannot be ruled out. We believe the increase in ASD diagnosis is likely due to a combination of these factors.

Within the past decade, CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network has been estimating the number of people with an ASD in the U.S. We have learned a lot about how many children in the U.S. have an ASD. It will be important to use the same methods to track how the number of people with an ASD is changing over time in order to learn more about the disorders.


If You’re Concerned
If you think your child might have an ASD or you think there could be a problem with the way your child plays, learns, speaks, or acts,contact your child’s doctor, and share your concerns.

If you or the doctor is still concerned, ask the doctor for a referral to a specialist who can do a more in-depth evaluation of your child. Specialists who can do a more in-depth evaluation and make a diagnosis include:

  • Developmental Pediatricians (doctors who have special training in child development and children with special needs)
  • Child Neurologists (doctors who work on the brain, spine, and nerves)
  • Child Psychologists or Psychiatrists (doctors who know about the human mind)

At the same time, call your state’s public early childhood system to request a free evaluation to find out if your child qualifies for intervention services. This is sometimes called a Child Find evaluation. You do not need to wait for a doctor’s referral or a medical diagnosis to make this call.

Where to call for a free evaluation from the state depends on your child’s age:

  • If your child is not yet 3 years old, contact your local early intervention system.You can find the right contact information for your state by calling the National Dissemination Center for Children with Disabilities (NICHCY) at 1-800-695-0285.Or visit the NICHCY website. Once you find your state on this webpage, look for the heading “Programs for Infants and Toddlers with Disabilities: Ages Birth through 3″.
  • If your child is 3 years old or older, contact your local public school system.Even if your child is not yet old enough for kindergarten or enrolled in a public school, call your local elementary school or board of education and ask to speak with someone who can help you have your child evaluated.If you’re not sure who to contact, call the National Dissemination Center for Children with Disabilities at 1.800.695.0285 or visit the NICHCY website. Once you find your state on this webpage, look for the heading “Programs for Children with Disabilities: Ages 3 through 5″.

Research shows that early intervention services can greatly improve a child’s development. In order to make sure your child reaches his or her full potential, it is very important to get help for an ASD as soon as possible.

National Developmental Disabilities Awareness Month

March is recognized as National Developmental Disabilities Awareness Month. If you or a friend, co-worker, loved one or client has a developmental disability, this month is for you!

Thanks to the advocacy efforts of The Arc in the 1980’s, February 26, 1987 President Ronald Reagan officially declared Proclamation 5613 making March National Developmental Disabilities Awareness Month.

The proclamation called for people to provide understanding, encouragement and opportunities to help persons with developmental disabilities to lead productive and fulfilling lives. March is recognized by groups across the country as a time to speak up about the challenges facing people with intellectual and developmental disabilities (I/DD) and their families.

Most people have disabilities of one kind or another. The differences lie mostly in degree and whether our disabilities are seen or unseen. We can help remind others of this important celebration during Developmental Disabilities Awareness Month by sharing these important facts:

Spread the word to your friends and family!

  • Developmental disability is a natural part of the human experience and affects about 4.6 million Americans.
  • All people with developmental disabilities can be productive, contributing members of their communities!
  • Many people with developmental disabilities rely on publicly funded services and supports in order to fully participate in community life.
  • During times of economic decline, essential services and supports for people with developmental disabilities are often threatened.
  • The power of people with disabilities is strongest when their voices are united with each other and their friends, families and other allies.
  • Policy makers can only make good public policy when they hear from the people directly affected by their decisions!

What can you do to advocate for individuals with special needs?

  • Spread the word about Development Disabilities Awareness Month through email, blog, and website updates.
  • Contact local, state, and federal legislators to “Don’t Cut Our Lifeline” – The Arc.
  • Get involved to protect Medicaid services for people with special needs.
  • Learn about essential services for your loved one with special needs.

Everyone wants, and deserves, to enjoy life, feel productive and secure. But in March, we take extra steps to raise awareness about the needs and rights of the people with disabilities and to celebrate their contributions to our communities and society as a whole!

President Reagan’s personal invitation
I invite all individuals, agencies, and organizations concerned with the problem of developmental disabilities to observe this month with appropriate observances and activities directed toward increasing public awareness of the needs and the potential of Americans with developmental disabilities.

I urge all Americans to join me in according to our fellow citizens with such disabilities both encouragement and the opportunities they need to lead productive lives and to achieve their full potential.”

January Is Glaucoma Awareness Month

Glaucoma is a very misunderstood disease. Often, people don’t realize the severity or who is affected.

Key Facts About Glaucoma

  • Glaucoma is a leading cause of blindness
    Glaucoma can cause blindness if it is left untreated. And unfortunately approximately 10% of people with glaucoma who receive proper treatment still experience loss of vision.
  • There is no cure (yet) for glaucoma
    Glaucoma is not curable, and vision lost cannot be regained. With medication and/or surgery, it is possible to halt further loss of vision. Since open-angle glaucoma is a chronic condition, it must be monitored for life. Diagnosis is the first step to preserving your vision.
  • Everyone is at risk for glaucoma
    Everyone is at risk for glaucoma from babies to senior citizens. Older people are at a higher risk for glaucoma but babies can be born with glaucoma (approximately 1 out of every 10,000 babies born in the United States). Young adults can get glaucoma, too. African Americans in particular are susceptible at a younger age.
  • There may be no symptoms to warn you
    With open-angle glaucoma, the most common form, there are virtually no symptoms. Usually, no pain is associated with increased eye pressure. Vision loss begins with peripheral or side vision. You may compensate for this unconsciously by turning your head to the side, and may not notice anything until significant vision is lost. The best way to protect your sight from glaucoma is to get tested. If you have glaucoma, treatment can begin immediately.

Some Statistics About Glaucoma

  • It is estimated that over 2.2 million Americans have glaucoma but only half of those know they have it.
  • In the U.S., more than 120,000 are blind from glaucoma, accounting for 9% to 12% of all cases of blindness.
  • Glaucoma is the second leading cause of blindness in the world, according to the World Health Organization.
  • After cataracts, glaucoma is the leading cause of blindness among African Americans.
  • Blindness from glaucoma is 6 to 8 times more common in African Americans than Caucasians.
  • African Americans are 15 times more likely to be visually impaired from glaucoma than Caucasians.
  • The most common form, open-angle glaucoma, accounts for 19% of all blindness among African Americans compared to 6% in Caucasians.
  • Other high-risk groups include: people over 60, family members of those already diagnosed, diabetics, and people who are severely nearsighted.
  • Estimates put the total number of suspected cases of glaucoma at over 60 million worldwide.

Lewy Body Dementia

What Is LBD?
LBD is not a rare disease. It affects an estimated 1.3 million individuals and their families in the United States. Because LBD symptoms can closely resemble other more commonly known diseases like Alzheimer’s and Parkinson’s, it is currently widely underdiagnosed. Many doctors or other medical professionals still are not familiar with LBD.LBD is an umbrella term for two related diagnoses. LBD refers to both Parkinson’s disease dementia and dementia with Lewy bodies. The earliest symptoms of these two diseases differ, but reflect the same underlying biological changes in the brain. Over time, people with both diagnoses will develop very similar cognitive, physical, sleep, and behavioral symptoms.While it may take more than a year or two for enough symptoms to develop for a doctor to diagnose LBD, it is critical to pursue a formal diagnosis. Early diagnosis allows for important early treatment that may extend quality of life and independence.LBD is a multisystem disease and typically requires a comprehensive treatment approach. This approach involves a team of physicians from different specialties who collaborate to provide optimum treatment of each symptom without worsening other LBD symptoms. Many people with LBD enjoy significant improvement of their symptoms with a comprehensive approach to treatment, and some can have remarkably little change from year to year.Some people with LBD are extremely sensitive or may react negatively to certain medications used to treat Alzheimer’s or Parkinson’s in addition to certain over-the-counter medications.

Who was Lewy?
In the early 1900s, while researching Parkinson’s disease, the scientist Friederich H. Lewy discovered abnormal protein deposits that disrupt the brain’s normal functioning. These Lewy body proteins are found in an area of the brain stem where they deplete the neurotransmitter dopamine, causing Parkinsonian symptoms. In Lewy body dementia, these abnormal proteins are diffuse throughout other areas of the brain, including the cerebral cortex. The brain chemical acetylcholine is depleted, causing disruption of perception, thinking and behavior. Lewy body dementia exists either in pure form, or in conjunction with other brain changes, including those typically seen in Alzheimer’s disease and Parkinson’s disease.

Early and accurate diagnosis of LBD, while not always easy to do, is of critical importance for two reasons.

  • First, people with LBD may respond more favorably to certain dementia medications than people with Alzheimer’s, allowing for early treatment that may improve or extend the quality of life for both the person with LBD and their caregiver.
  • Secondly, many people with LBD respond more poorly to certain medications for behavior and movement than people with Alzheimer’s or Parkinson’s, sometimes with dangerous or permanent side effects.

By learning about common forms of dementia, you can help your physician most quickly identify what type of dementia has developed.

Common Forms of Dementia

Alzheimer’s disease symptoms include a progressive loss of recent memory; problems with language, calculation, abstract thinking, and judgment; depression or anxiety; personality and behavioral changes; and disorientation to time and place.

Lewy body dementia (LBD) is an umbrella term for a form of dementia that has three common presentations.

  • Some individuals will start out with a memory or cognitive disorder that may resemble Alzheimer’s disease, but over time two or more distinctive features become apparent leading to the diagnosis of ‘dementia with Lewy bodies’ (DLB). Symptoms that differentiate it from Alzheimer’s include unpredictable levels of cognitive ability, attention or alertness, changes in walking or movement, visual hallucinations, a sleep disorder called REM sleep behavior disorder, in which people physically act out their dreams, and severe sensitivity to medications for hallucinations. In some cases, the sleep disorder can precede the dementia and other symptoms of LBD by decades.
  • Others will start out with a movement disorder leading to the diagnosis of Parkinson’s disease and later develop dementia and other symptoms common in DLB.
  • Lastly, a small group will first present with neuropsychiatric symptoms, which can include hallucinations, behavioral problems, and difficulty with complex mental activities, leading to an initial diagnosis of DLB.

Regardless of the initial symptom, over time all three presentations of LBD will develop very similar cognitive, physical, sleep and behavioral features, all caused by the presence of Lewy bodies throughout the brain.

Vascular dementia is caused by a series of small strokes that deprive the brain of vital oxygen. Symptoms, such as disorientation in familiar locations; walking with rapid, shuffling steps; incontinence; laughing or crying inappropriately; difficulty following instructions; and problems handling money may appear suddenly and worsen with additional strokes. High blood pressure, cigarette smoking, and high cholesterol are some of the risk factors for stroke that may be controlled to prevent vascular dementia.

Frontotemporal dementia (FTD) includes several disorders with a variety of symptoms. The most common signs of FTD include changes in personality and behavior, such as inappropriate or compulsive behavior, euphoria, apathy, decline in personal hygiene, and a lack of awareness concerning these changes. Some forms of FTD involve language and speech symptoms or movement changes.

An experienced clinician within the medical community should perform a diagnostic evaluation. If one is not available, the neurology department of the nearest medical university should be able to recommend appropriate resources or may even provide an experienced diagnostic team skilled in Lewy body dementia.

A thorough dementia diagnostic evaluation includes physical and neurological examinations, patient and family interviews (including a detailed lifestyle and medical history), and neuro-psychological and mental status tests. The patient’s functional ability, attention, language, visuospatial skills, memory and executive functioning are assessed. In addition, brain imaging (CT or MRI scans), blood tests and other laboratory studies may be performed. The evaluation will provide a clinical diagnosis. Currently, a conclusive diagnosis of LBD can be obtained only from a postmortem autopsy for which arrangements should be made in advance. Some research studies may offer brain autopsies as part of their protocols. Participating in research studies is a good way to benefit others with Lewy body dementia.

Medications
Medications are one of the most controversial subjects in dealing with LBD. A medication that doesn’t work for one person may work for another person.

Prescribing should only be done by a physician who is thoroughly knowledgeable about LBD. With new medications and even ‘over-the-counter,’ the patient should be closely monitored. At the first sign of an adverse reaction, consult with the patient’s physician. Consider joining an online caregiver support group to see what others have observed with prescription and over-the-counter medicines.

Risk Factors
Advanced age is considered to be the greatest risk factor for Lewy body dementia, with onset typically, but not always, between the ages of 50 and 85. Some cases have been reported much earlier. It appears to affect slightly more men than women. Having a family member with Lewy body dementia may increase a person’s risk. Observational studies suggest that adopting a healthy lifestyle (exercise, mental stimulation, nutrition) might delay age-associated dementias.

Clinical Trials
The recruitment of LBD patients for participation in clinical trials for studies on LBD, other dementias and Parkinsonian studies is now steadily increasing.

Prognosis and Stages
No cure or definitive treatment for Lewy body dementia has been discovered as yet. The disease has an average duration of 5 to 7 years. It is possible, though, for the time span to be anywhere from 2 to 20 years, depending on several factors, including the person’s overall health, age and severity of symptoms.

Defining the stages of disease progression for LBD is difficult. The symptoms, medicine management and duration of LBD vary greatly from person to person. To further complicate the stages assessment, LBD has a progressive but vacillating clinical course, and one of its defining symptoms is fluctuating levels of cognitive abilities, alertness and attention. Sudden decline is often caused by medications, infections or other compromises to the immune system and usually the person with LBD returns to their baseline upon resolution of the problem.  But for some individuals, it may also be due to the natural course of the disease.

Symptoms

Lewy body dementia symptoms and diagnostic criteria
Every person with LBD is different and will manifest different degrees of the following symptoms. Some will show no signs of certain features, especially in the early stages of the disease. Symptoms may fluctuate as often as moment-to-moment, hour-to-hour or day-to-day. NOTE: Some patients meet the criteria for LBD yet score in the normal range of some cognitive assessment tools. The Mini-Mental State Examination (MMSE), for example, cannot be relied upon to distinguish LBD from other common syndromes.

LBD is a an umbrella term for two related clinical diagnoses, dementia with Lewy bodies and Parkinson’s disease dementia.

The latest clinical diagnostic criteria for dementia with Lewy bodies (DLB) categorizes symptoms into three types, listed below.  A diagnosis of Parkinsons’ disease dementia (PDD) requires a well established diagnosis of Parkinson’s disease that later progresses into dementia, along with very similar features to DLB.  A rather arbirary time cutoff was established to differentiate between DLB and PDD.  People whose dementia occurs before or within 1 year of Parkinson’s symptoms are diagnosed with DLB.  People who have an existing diagnosis of Parkinson’s for more than a year and later develop dementia are diagnosed with PDD.

Central feature

  • Progressive dementia – deficits in attention and executive function are typical. Prominent memory impairment may not be evident in the early stages.

Core features

  • Fluctuating cognition with pronounced variations in attention and alertness.
  • Recurrent complex visual hallucinations, typically well formed and detailed.
  • Spontaneous features of parkinsonism.

Suggestive features

  • REM sleep behavior disorder (RBD), which can appear years before the onset of dementia and parkinsonism.
  • Severe sensitivity to neuroleptics occurs in up to 50% of LBD patients who take them.
  • Low dopamine transporter uptake in the brain’s basal ganglia as seen on SPECT and PET imaging scans. (These scans are not yet available outside of research settings.)

Supportive features

  • Repeated falls and syncope (fainting).
  • Transient, unexplained loss of consciousness.
  • Autonomic dysfunction.
  • Hallucinations of other senses, like touch or hearing.
  • Visuospatial abnormalities.
  • Other psychiatric disturbances.

A clinical diagnosis of LBD can be probable or possible based on different symptom combinations.

A probable LBD diagnosis requires either:

  • Dementia plus two or more core features, or
  • Dementia plus one core feature and one or more suggestive features.

A possible LBD diagnosis requires:

  • Dementia plus one core feature, or
  • Dementia plus one or more suggestive features.

Symptoms Explained
In this section we’ll discuss each of the symptoms, starting with the key word: dementia. Dementia is a process whereby the person becomes progressively confused. The earliest signs are usually memory problems, changes in their way of speaking, such as forgetting words, and personality problems. Cognitive symptoms of dementia include poor problem solving, difficulty with learning new skills and impaired decision making.

Other causes of dementia should be ruled out first, such as alcoholism, overuse of medication, thyroid or metabolic problems. Strokes can also cause dementia. If these reasons are ruled out then the person is said to have a degenerative dementia. Lewy Body Dementia is second only to Alzheimer’s disease as the most common form of dementia.

Fluctuations in cognition will be noticeable to those who are close to the person with LBD, such as their partner. At times the person will be alert and then suddenly have acute episodes of confusion. These may last hours or days. Because of these fluctuations, it is not uncommon for it to be thought that the person is “faking”. This fluctuation is not related to the well-known “sundowning” of Alzheimer’s. In other words, there is no specific time of day when confusion can be seen to occur.

Hallucinations are usually, but not always, visual and often are more pronounced when the person is most confused. They are not necessarily frightening to the person. Other modalities of hallucinations include sound, taste, smell, and touch.

Parkinsonism or Parkinson’s Disease symptoms, take the form of changes in gait; the person may shuffle or walk stiffly. There may also be frequent falls. Body stiffness in the arms or legs, or tremors may also occur. Parkinson’s mask (blank stare, emotionless look on face), stooped posture, drooling and runny nose may be present.

REM Sleep Behavior Disorder (RBD) is often noted in persons with Lewy Body Dementia. During periods of REM sleep, the person will move, gesture and/or speak. There may be more pronounced confusion between the dream and waking reality when the person awakens. RBD may actually be the earliest symptom of LBD in some patients, and is now considered a significant risk factor for developing LBD. (One recent study found that nearly two-thirds of patients diagnosed with RBD developed degenerative brain diseases, including Lewy body dementia, Parkinson’s disease, and multiple system atrophy, after an average of 11 years of receiving an RBD diagnosis. All three diseases are called synucleinopathies, due to the presence of a mis-folded protein in the brain called alpha-synuclein.)

Sensitivity to neuroleptic (anti-psychotic) drugs is another significant symptom that may occur. These medications can worsen the Parkinsonism and/or decrease the cognition and/or increase the hallucinations. Neuroleptic Malignancy Syndrome, a life-threatening illness, has been reported in persons with Lewy Body Dementia. For this reason, it is very important that the proper diagnosis is made and that healthcare providers are educated about the disease.

Other Symptoms
Visuospatial difficulties, including depth perception, object orientation, directional sense and illusions may occur.

Autonomic dysfunction, including blood pressure fluctuations (e.g. postural/orthostatic hypotension) heart rate variability (HRV), sexual disturbances/impotence, constipation, urinary problems, hyperhidrosis (excessive sweating), decreased sweating/heat intolerance, syncope (fainting), dry eyes/mouth, and difficulty swallowing which may lead to aspiration pneumonia.

Other psychiatric disturbances may include systematized delusions, aggression and depression. The onset of aggression in LBD may have a variety of causes, including infections (e.g., UTI), medications, misinterpretation of the environment or personal interactions, and the natural progression of the disease.

Treatment Options

LBD is a multi-system disease and typically requires a comprehensive treatment approach, meaning a team of physicians from different specialties, who collaborate to provide optimum treatment of each symptom without worsening other LBD symptoms.  It is important to remember that some people with LBD are extremely sensitive or may react negatively to certain medications used to treat Alzheimer’s or Parkinson’s in addition to certain over-the-counter medications.

Cognitive Symptoms
Medications called cholinesterase inhibitors are considered the standard treatment for cognitive symptoms in LBD. These medications were developed to treat Alzheimer’s disease. However, some researchers believe that people with LBD may be even more responsive to these types of medications than those with Alzheimer’s.

Movement Symptoms
Movement symptoms may be treated with a Parkinson’s medication called levodopa, but if the symptoms are mild, it may be best to not treat them in order to avoid potential medication side-effects.

Visual Hallucinations
If hallucinations are disruptive or upsetting, your physician may recommend a cautious trial of a newer antipsychotic medication. (Please see WARNING below.)  Of note, the dementia medications called cholinesterase inhibitors have also been shown to be effective in treating hallucinations and other psychiatric symptoms of LBD.

REM Sleep Behavior Disorder (RBD)
RBD can be quite responsive to treatment, so your physician may recommend a medication like melatonin and/or clonazepam.

Neuroleptic Sensitivity
Severe sensitivity to neuroleptics is common in LBD. Neuroleptics, also known as antipsychotics, are medications used to treat hallucinations or other serious mental disorders. While traditional antipsychotic medications (e.g. haloperidol) are commonly prescribed for individuals with Alzheimer’s with disruptive behavior, these medications can affect the brain of an individual with LBD differently, sometimes causing severe side effects (see below). For this reason, traditional antipsychotic medications like haloperidol should be avoided. Some newer ‘atypical’ antipsychotic medications like risperidone may also be problematic for someone with LBD. Quetiapine is preferred by some LBD experts. If quetiapine is not tolerated or is not helpful, clozapine should be considered, but requires ongoing blood tests to assure a rare but serious blood condition does not develop. Hallucinations must be treated very conservatively, using the lowest doses possible under careful observation for side effects.

WARNING:
Up to 50% of patients with LBD who are treated with any antipsychotic medication may experience severe neuroleptic sensitivity, such as worsening cognition, heavy sedation, increased or possibly irreversible parkinsonism, or symptoms resembling neuroleptic malignant syndrome (NMS), which can be fatal. (NMS causes severe fever, muscle rigidity and breakdown that can lead to kidney failure.)

Medication Side Effects
Speak with your doctor about possible side effects. The following drugs may cause sedation, motor impairment or confusion:

  • Benzodiazepines, tranquilizers like diazepam and lorazepam
  • Anticholinergics (antispasmodics), such as oxybutynin and glycopyrrolate
  • Some surgical anesthetics
  • Older antidepressants
  • Certain over-the-counter medications, including diphenhydramine and dimenhydrinate.
  • Some medications, like anticholinergics, amantadine and dopamine agonists, which help relieve parkinsonian symptoms, might increase confusion, delusions or hallucinations.

NOTE: Be sure to meet with your anesthesiologist in advance of any surgery to discuss medication sensitivities and risks unique to LBD. People with LBD often respond to certain anesthetics and surgery with acute states of confusion or delirium and may have a sudden significant drop in functional abilities, which may or may not be permanent.

Possible alternatives to general anesthesia include a spinal or regional block. These methods are less likely to result in postoperative confusion. If you are told to stop taking all medications prior to surgery, consult with your doctor to develop a plan for careful withdrawal.

Non-Medical Treatments

Physical therapy options include cardiovascular, strengthening, and flexibility exercises, as well as gait training. Physicians may also recommend general physical fitness programs such as aerobic, strengthening, or water exercise.

Speech therapy may be helpful for low voice volume and poor enunciation. Speech therapy may also improve muscular strength and swallowing difficulties.

Occupational therapy may help maintain skills and promote function and independence. In addition to these forms of therapy and treatment, music and aroma therapy can also reduce anxiety and improve mood.

Individual and family psychotherapy can be useful for learning strategies to manage emotional and behavioral symptoms and to help make plans that address individual and family concerns about the future.

Support groups may be helpful for caregivers and persons with LBD to identify practical solutions to day-to-day frustrations, and to obtain emotional support from others.

End-of-Life
Planning for the end of life can be a valuable activity for any family. The links below offer general guidance and some specific suggestions for families who face the burden of a disease such as Lewy body dementia.

Advanced Directives – a Caring Connections site with state-specific advanced directives

Caring Connections – home page of consumer Web site about hospice and palliative care managed by the National Hospice and Palliative Care Organization

Palliative Doctors – a Web site for consumers managed by the American Academy of Hospice and Palliative Care about palliative care

Wreaths Across America

The annual Wreaths Across America event will be held at Arlington National Cemetery Saturday, December 12, 2015. The Opening Ceremony will be held at 9:30 a.m. at McClellan Gate, which is at the intersection of McClellan and Eisenhower Drives – near the main entrance of Arlington National Cemetery. At the ceremony, volunteers will receive a short briefing then move to the designated areas of the cemetery to participate in the laying of wreaths at headstones.

Participants are encouraged to use the Metro. No vehicle access will be allowed in the cemetery until 3 p.m. Families with permanent parking passes can park in the Welcome Center Garage free-of-charge until 3 p.m. The Administration Parking Lot is designated parking for those with disabilities. No general parking is permitted in the Welcome Center Garage.

For more information, go to http://www.wreathsacrossamerica.org

Holiday Travel Preparation

With the holidays only a few short weeks away, it’s time to get plans for family visits and end of year trips finalized before the busy season is in full swing. Traveling with a disability that requires mobility equipment can quickly become a stressful task if proper accommodations have not been made in advance.  Preparing ahead of time can save you some headaches when it is time to board your plane. Here are some things to keep in mind when planning your upcoming vacations:

  • Be sure to inform your airline if you or someone you are traveling with uses a wheelchair, mobility equipment or will need to bring medical equipment onto the aircraft.
  • Ensure you have refilled prescriptions for any medications you may need throughout the duration of your trip.
  • If you need to rent a car, make these arrangements in advance to guarantee a handicap accessible vehicle.
  • If possible, bring any tools you might need in case you experience any issues with your wheelchair. If you have replacement parts, it might be a good idea to bring these along as well.
  • If your wheelchair must be checked for your flight, make sure to tag it as you would the rest of your luggage. Include your name and contact details, as well as those of your hotel or wherever else you may be staying.
  • Staying somewhere other than home can be a challenge so make sure your hotel or other arrangements are accessible by wheelchair (if necessary) and can otherwise accommodate you.
  • Plan to arrive at the airport as early as possible to ensure you have plenty of time to make your way through security and finalize any special accommodations you might require for your mobility equipment.
  • When booking your flights, know that passengers requiring a wheelchair are generally the first to board and last to leave the plane, meaning that connecting flights with short layovers may become difficult.

Despite having to take select special measures, those living with disabilities should not be apprehensive to fly or travel. Airlines have become more and more accommodating and understanding, making this the perfect time to book a vacation and get back in touch with faraway friends and family.

Friedreich’s Ataxia

Friedreich’s ataxia (also called FA or FRDA) is a rare inherited disease that causes nervous system damage and movement problems. It usually begins in childhood and leads to impaired muscle coordination (ataxia) that worsens over time. The disorder is named after Nicholaus Friedreich, a German doctor who first described the condition in the 1860s.

In Friedreich’s ataxia the spinal cord and peripheral nerves degenerate, becoming thinner. The cerebellum, part of the brain that coordinates balance and movement, also degenerates to a lesser extent. This damage results in awkward, unsteady movements and impaired sensory functions. The disorder also causes problems in the heart and spine, and some people with the condition develop diabetes. The disorder does not affect thinking and reasoning abilities (cognitive functions).

Friedreich’s ataxia is caused by a defect (mutation) in a gene labeled FXN. The disorder is recessive, meaning it occurs only in someone who inherits two defective copies of the gene, one from each parent. Although rare, Friedreich’s ataxia is the most common form of hereditary ataxia, affecting about 1 in every 50,000 people in the United States. Both male and female children can inherit the disorder.

What are the signs and symptoms?
Symptoms typically begin between the ages of 5 and 15 years, although they sometimes appear in adulthood and on rare occasions as late as age 75. The first symptom to appear is usually gait ataxia, or difficulty walking. The ataxia gradually worsens and slowly spreads to the arms and the trunk. There is often loss of sensation in the extremities, which may spread to other parts of the body. Other features include loss of tendon reflexes, especially in the knees and ankles. Most people with Friedreich’s ataxia develop scoliosis (a curving of the spine to one side), which often requires surgical intervention for treatment.

Dysarthria (slowness and slurring of speech) develops and can get progressively worse. Many individuals with later stages of Friedreich’s ataxia develop hearing and vision loss.

Other symptoms that may occur include chest pain, shortness of breath, and heart palpitations. These symptoms are the result of various forms of heart disease that often accompany Friedreich’s ataxia, such as hypertrophic cardiomyopathy (enlargement of the heart), myocardial fibrosis (formation of fiber-like material in the muscles of the heart), and cardiac failure. Heart rhythm abnormalities such as tachycardia (fast heart rate) and heart block (impaired conduction of cardiac impulses within the heart) are also common.

About 20 percent of people with Friedreich’s ataxia develop carbohydrate intolerance and 10 percent develop diabetes. Most individuals with Friedreich’s ataxia tire very easily and find that they require more rest and take a longer time to recover from common illnesses such as colds and flu.

The rate of progression varies from person to person. Generally, within 10 to 20 years after the appearance of the first symptoms, the person is confined to a wheelchair, and in later stages of the disease individuals may become completely incapacitated.

Friedreich’s ataxia can shorten life expectancy, and heart disease is the most common cause of death. However, some people with less severe features of Friedreich’s ataxia live into their sixties, seventies, or older.

How is Friedreich’s ataxia diagnosed?
A diagnosis of Friedreich’s ataxia requires a careful clinical examination, which includes a medical history and a thorough physical exam, in particular looking for balance difficulty, loss of proprioception (joint sensation), absence of reflexes, and signs of neurological problems. Genetic testing now provides a conclusive diagnosis. Other tests that may aid in the diagnosis or management of the disorder include:

  • electromyogram (EMG), which measures the electrical activity of muscle cells,
  • nerve conduction studies, which measure the speed with which nerves transmit impulses,
  • electrocardiogram (ECG), which gives a graphic presentation of the electrical activity or beat pattern of the heart,
  • echocardiogram, which records the position and motion of the heart muscle,
  • blood tests to check for elevated glucose levels and vitamin E levels, and
  • magnetic resonance imaging (MRI) or computed tomography (CT) scans, tests which provide brain and spinal cord images that are useful for ruling out other neurological conditions.

How is Friedreich’s ataxia inherited?
Friedreich’s ataxia is an autosomal recessive disease, meaning individuals only develop symptoms if they inherit two copies of the defective FXN gene, one from their father and one from their mother. A person who has only one abnormal copy of the gene is called a carrier. A carrier will not develop the disease but could pass the gene mutation on to his or her children. If both parents are carriers, their children will have a 1 in 4 chance of having the disease and a 1 in 2 chance of inheriting one abnormal gene that they, in turn, could pass on to their children. About one in 90 Americans of European ancestry carries an abnormal FXN gene.

In 1996, an international research team identified the Friedreich’s ataxia gene on chromosome 9. The FXN gene codes for production of a protein called “frataxin.” In the normal version of the gene, a sequence of DNA (labeled “GAA”) is repeated between 7 and 22 times. In the defective FXN gene, the repeat occurs over and over again—hundreds, even up to a thousand times.

This abnormal pattern, called a triplet repeat expansion, has been implicated as the cause of several dominantly inherited diseases, but Friedreich’s ataxia is the only known recessive genetic disorder caused by the problem. Almost all people with Friedreich’s ataxia have two copies of this mutant form of FXN, but it is not found in all cases of the disease. About two percent of affected individuals have other defects in the FXN gene that are responsible for causing the disease.

The triplet repeat expansion greatly disrupts the normal production of frataxin. Frataxin is found in the energy-producing parts of the cell called mitochondria. Research suggests that without a normal level of frataxin, certain cells in the body (especially peripheral nerve, spinal cord, brain and heart muscle cells) cannot effectively produce energy and have been hypothesized to have a buildup of toxic byproducts leading to what is called “oxidative stress.” It also may lead to increased levels of iron in the mitochondria. When the excess iron reacts with oxygen, free radicals can be produced. Although free radicals are essential molecules in the body’s metabolism, they can also destroy cells and harm the body. Research continues on this subject (see section on “What research is being done?”).

Can Friedreich’s ataxia be cured or treated?
As with many degenerative diseases of the nervous system, there is currently no cure or effective treatment for Friedreich’s ataxia. However, many of the symptoms and accompanying complications can be treated to help individuals maintain optimal functioning as long as possible. Doctors can prescribe treatments for diabetes, if present; some of the heart problems can be treated with medication as well. Orthopedic problems such as foot deformities and scoliosis can be corrected with braces or surgery. Physical therapy may prolong use of the arms and legs. Advances in understanding the genetics of Friedreich’s ataxia are leading to breakthroughs in treatment. Research has moved forward to the point where clinical trials of proposed treatments are presently occurring for Friedreich’s ataxia.

What services are useful to Friedreich’s ataxia patients and their families?
Genetic testing is essential for proper clinical diagnosis, and can aid in prenatal diagnosis and determining a person’s carrier status. Genetic counselors can help explain how Friedreich’s ataxia is inherited. Psychological counseling and support groups for people with genetic diseases may also help affected individuals and their families cope with the disease.

A primary care physician can screen people for complications such as heart disease, diabetes and scoliosis, and can refer individuals to specialists such as cardiologists, physical therapists, and speech therapists to help deal with some of the other associated problems.

Support and information for families is also available through a number of private organizations. These groups can offer ways to network and communicate with others affected by Friedreich’s ataxia. They can also provide access to patient registries, clinical trials information, and other useful resources.

What research is being done?
Within the Federal government the National Institute of Neurological Disorders and Stroke (NINDS), a component of the National Institutes of Health (NIH), has primary responsibility for sponsoring research on neurological disorders. As part of this mission, the NINDS conducts research on Friedreich’s ataxia and other forms of inherited ataxias at its facilities at the NIH and supports additional studies at medical centers throughout the United States. Several nonprofit organizations also provide substantial support research (see the section on “Where can I get more information?”).

Researchers are optimistic that they have begun to understand the causes of the disease, and work has begun to develop effective treatments and prevention strategies for Friedreich’s ataxia. Scientists have been able to create various models of the disease in yeast and mice which have facilitated understanding the cause of the disease and are now being used for drug discovery and the development of novel treatments.

Studies have revealed that frataxin is an important mitochondrial protein for proper function of several organs. Yet in people with the disease, the amount of frataxin in affected cells is severely reduced. It is believed that the loss of frataxin makes the nervous system, heart, and pancreas particularly susceptible to damage from free radicals (produced when the excess iron reacts with oxygen). Once certain cells in these tissues are destroyed by free radicals they cannot be replaced. Nerve and muscle cells also have metabolic needs that may make them particularly vulnerable to this damage. Free radicals have been implicated in other degenerative diseases such as Parkinson’s and Alzheimer’s diseases.

Based upon this information, scientists and physicians have tried to reduce the levels of free radicals, also called oxidants, using treatment with “antioxidants.” Initial clinical studies in Europe suggested that antioxidants like coenzyme Q10, vitamin E, and idebenone may offer individuals some limited benefit. However, recent clinical trials in the United States and Europe have not revealed effectiveness of idebenone in people with Friedreich’s ataxia, but more powerful modified forms of this agent and other antioxidants are in trials at this time. There is also a clinical trial to examine the efficacy of selectively removing excess iron from the mitochondria.

Scientists also are exploring ways to increase frataxin levels through drug treatments, genetic engineering and protein delivery systems. Several compounds that are directed at increasing levels of frataxin may be brought to clinical trials in the near future. To check for current trials, visit http://www.clinicaltrials.gov. Additional information is available from the groups listed in the following section.

Armed with what they currently know about frataxin and Friedreich’s ataxia, scientists are working to better define fraxatin’s role, clarify how defects in iron metabolism may be involved in the disease process, and explore new therapeutic approaches for therapy.

Emphysema Awareness

Chronic obstructive pulmonary disease (COPD) is one of the leading cause of death in the U.S. and affects more than 12 million Americans.  COPD – which includes emphysema and chronic bronchitis – is a term used to describe the obstruction of airflow.

COPD cannot be cured, but it can be treated. Early detection and diagnosis is the key to successful management of this chronic disease.

Emphysema is a long-term, progressive disease of the lungs that primarily causes shortness of breath due to over-inflation of the alveoli (air sacs in the lung). In people with emphysema, the lung tissue involved in exchange of gases (oxygen and carbon dioxide) is impaired or destroyed. Emphysema is included in a group of diseases called chronic obstructive pulmonary disease or COPD (pulmonary refers to the lungs). Emphysema is called an obstructive lung disease because airflow on exhalation is slowed or stopped because over-inflated alveoli do not exchange gases when a person breaths due to little or no movement of gases out of the alveoli.

Emphysema changes the anatomy of the lung in several important ways. This is due to in part to the destruction of lung tissue around smaller airways. This tissue normally holds these small airways, called bronchioles, open, allowing air to leave the lungs on exhalation. When this tissue is damaged, these airways collapse, making it difficult for the lungs to empty and the air (gases) becomes trapped in the alveoli.

Normal lung tissue looks like a new sponge. Emphysematous lung looks like an old used sponge, with large holes and a dramatic loss of “springy-ness” or elasticity. When the lung is stretched during inflation (inhalation), the nature of the stretched tissue wants to relax to its resting state. In emphysema, this elastic function is impaired, resulting in air trapping in the lungs. Emphysema destroys this spongy tissue of the lung and also severely affects the small blood vessels (capillaries of the lung) and airways that run throughout the lung. Thus, not only is airflow affected but so is blood flow. This has dramatic impact on the ability for the lung not only to empty its air sacs called alveoli (pleural for alveolus) but also for blood to flow through the lungs to receive oxygen.

November is Caregiver Awareness Month

Each year, more and more Americans are caring for a loved one with a chronic condition, disAbility, or the frailties of old age.  There are as many as 90 million family caregivers in the U.S. today.

  • Two out of every 5 adults are family caregivers.  39% of all adult Americans are caring for a loved one who is sick or disAbled – up from 30% in 2010.
  • Alzheimer’s is driving the numbers up.  More than 15 million family caregivers are providing care to more than 5 million loved ones with Alzheimer’s disease.
  • But it’s not just the elderly who need caregiving.  The number of parents caring for children with special needs is increasing, too, due to the rise in cases of many childhood conditions.
  • Wounded veterans require family caregivers, too.  As many as 1 million Americans are caring in their homes for service members from the Iraq and Afghanistan wars who are suffering from traumatic brain injury, post-traumatic stress disorder, or other wounds and illnesses.
  • And it’s not just women doing the caregiving.  Men are now almost as likely to say they are family caregivers as women are (37% of men; 40% of women). And 36% of younger Americans between ages 18 and 29 are family caregivers as well, including 1 million young people who care for loved ones with Alzheimer’s.
  • Family caregiving is serious work.  Almost half of family caregivers perform complex medical/nursing tasks for their loved ones – such as managing multiple medications, providing wound care, and operating specialized medical equipment.
  • Family caregivers are the backbone of the Nation’s long-term care system. Family caregivers provide $450 billion worth of unpaid care each year.That’s more than total Medicaid funding, and twice as much as homecare and nursing home services combined.

With the ranks of family caregivers growing every year – tens of millions strong – we recognize the importance to the Nation of the role that family caregivers play.

Mental Health Awareness

Trying to tell the difference between what expected behaviors are and what might be the signs of a mental illness isn’t always easy. There’s no easy test that can let someone know if there is mental illness or if actions and thoughts might be typical behaviors of a person or the result of a physical illness.

Each illness has its own set of symptoms but some common signs of mental illness in adults and adolescents can include the following.

  • Excessive worrying or fear
  • Feeling excessively sad or low
  • Confused thinking or problems concentrating and learning
  • Extreme mood changes, including uncontrollable “highs” or feelings of euphoria
  • Prolonged or strong feelings of irritability or anger
  • Avoiding friends and social activities
  • Difficulties understanding or relating to other people
  • Changes in sleeping habits or feeling tired and low energy
  • Changes in eating habits such as increased hunger or lack of appetite
  • Changes in sex drive
  • Difficulty perceiving reality (delusions or hallucinations, in which a person experiences and senses things that don’t exist in objective reality)
  • Inability to perceive changes in one’s own feelings, behavior or personality (”lack of insight” or anosognosia)
  • Abuse of substances like alcohol or drugs
  • Multiple physical ailments without obvious causes (such as headaches, stomach aches, vague and ongoing “aches and pains”)
  • Thinking about suicide
  • Inability to carry out daily activities or handle daily problems and stress
  • An intense fear of weight gain or concern with appearance (mostly in adolescents)

Mental health conditions can also begin to develop in young children. Because they’re still learning how to identify and talk about thoughts and emotions, their most obvious symptoms are behavioral. Symptoms in children may include:

  • Changes in school performance
  • Excessive worry or anxiety, for instance fighting to avoid bed or school
  • Hyperactive behavior
  • Frequent nightmares
  • Frequent disobedience or aggression
  • Frequent temper tantrums

October Is Car Care Month: Is your vehicle prepared for winter driving?

Is your car ready to handle freezing conditions? Frigid temps can take a toll on your car and make winter driving even more hazardous than usual.
Here are a few tips to adapt to winter roads and preparing your car for the extreme cold.

Check the car’s battery
Cold weather takes a toll on batteries and requires a full charge. A battery is 35 percent weaker at 32 degrees and 60 percent weaker at zero degrees.

A load test by a qualified technician can determine whether a car’s battery is strong enough for winter. Keep in mind that if the car started with a jump start, the problem is not fixed and the battery most likely needs replacing.

Starting
Avoid excessive cranking. If the car doesn’t start after 20 seconds of cranking, wait a couple of minutes to let the battery recover.

Tire preparation
Tires should have sufficient tread depth that can handle New England’s winter weather. All-season tires are adequate for most vehicles but to get the greatest traction for both starting and stopping, snow tires are recommended. When considering snow tires, they should be installed on all four wheels

See and be seen
Clear windows, mirrors, and lights with an ice scraper, brush, or a spray de-icer. Driving with a snow-covered windshield, windows, side-view mirrors or lights invites a crash.

Completely clean snow from the roof, hood, and trunk. Windshield wipers and defrosters should be in good working order and washer reservoirs should be filled with no-freeze windshield washer fluid.

Consider specially designed winter wiper blades that prevent snow and ice buildup and improve visibility.

Reduce speeds
Most winter crashes happen from driving too fast for the weather conditions. Remember, everything takes longer on snow-covered roads, including accelerating, stopping, and turning.

Nothing happens as quickly as on dry pavement so allow time to maneuver by driving slowly.

All-wheel drive is best
All-wheel-drive or four-wheel-drive will help to get a car moving, but bear in mind it does little to improve braking. Don’t become overconfident and drive too fast for winter road conditions.

Anticipate stopping distance
In temperatures at or just above 32 degrees, a thin layer of water can cover the ice and cause slippery conditions, especially at intersections where snow and ice tend to melt first. The distance needed to stop on ice at 32 degrees is twice as long as at zero degrees.

Keep the engine cool
Mix certain cooling system antifreeze with an equal portion of water for maximum protection.

Mental Illness Awareness

In 1990, the U.S. Congress established the first full week of October as Mental Illness Awareness Week (MIAW) in recognition of NAMI’s efforts to raise mental illness awareness. Since then, mental health advocates across the country have joined with others in their communities to sponsor activities, large or small, for public education about mental illness.

What is mental illness?

A mental illness is a medical condition that disrupts a person’s thinking, feeling, mood, ability to relate to others and daily functioning. Just as diabetes is a disorder of the pancreas, mental illnesses are medical conditions that often result in a diminished capacity for coping with the ordinary demands of life.

Serious mental illnesses include major depression, schizophrenia, bipolar disorder, obsessive compulsive disorder (OCD), panic disorder, posttraumatic stress disorder (PTSD) and borderline personality disorder. The good news about mental illness is that recovery is possible.

Mental illnesses can affect persons of any age, race, religion or income. Mental illnesses are not the result of personal weakness, lack of character or poor upbringing. Mental illnesses are treatable. Most people diagnosed with a serious mental illness can experience relief from their symptoms by actively participating in an individual treatment plan.

National Disability Employment Awareness Month

Held each October, National Disability Employment Awareness Month (NDEAM) is a national campaign that raises awareness about disability employment issues and celebrates the many and varied contributions of America’s workers with disabilities. The theme for 2015 is “My Disability Is One Part of Who I Am”

NDEAM’s roots go back to 1945, when Congress enacted a law declaring the first week in October each year “National Employ the Physically Handicapped Week.” In 1962, the word “physically” was removed to acknowledge the employment needs and contributions of individuals with all types of disabilities. In 1988, Congress expanded the week to a month and changed the name to “National Disability Employment Awareness Month.” Upon its establishment in 2001, ODEP assumed responsibility for NDEAM and has worked to expand its reach and scope ever since.

Rett Syndrome Awareness

What is Rett Syndrome?
Rett syndrome is a postnatal neurological disorder seen almost always in girls, but can be rarely seen in boys. It is not a degenerative disorder.

Rett syndrome is caused by mutations on the X chromosome on a gene called MECP2. There are more than 200 different mutations found on the MECP2 gene. Most of these mutations are found in eight different “hot spots.”

Rett syndrome strikes all racial and ethnic groups, and occurs worldwide in 1 of every 10,000 to 23,000 female births.

Rett syndrome causes problems in brain function that are responsible for cognitive, sensory, emotional, motor and autonomic function. These can include learning, speech, sensory sensations, mood, movement, breathing, cardiac function, and even chewing, swallowing, and digestion.

Rett syndrome symptoms appear after an early period of apparently normal or near normal development until six to eighteen months of life, when there is a slowing down or stagnation of skills. A period of regression then follows when she loses communication skills and purposeful use of her hands. Soon, stereotyped hand movements such as handwashing, gait disturbances, and slowing of the normal rate of head growth become apparent. Other problems may include seizures and disorganized breathing patterns while she is awake. In the early years, there may be a period of isolation or withdrawal when she is irritable and cries inconsolably. Over time, motor problems may increase, but in general, irritability lessens and eye contact and communication improve.

Rett syndrome can present with a wide range of disability ranging from mild to severe. The course and severity of Rett syndrome is determined by the location, type and severity of her mutation and X-inactivation. Therefore, two girls of the same age with the same mutation can appear quite different.


Testing and Diagnosis
Rett syndrome is most often misdiagnosed as autism, cerebral palsy, or non-specific developmental delay. In the past, making the correct diagnosis called not only for a long list of diagnostic tests and procedures to rule out other disorders, but it also took from months to years waiting to confirm the diagnosis as new symptoms appeared over time. Today, we have a simple blood test to confirm the diagnosis. However, since we know that the MECP2 mutation is also seen in other disorders, the presence of the MECP2 mutation in itself is not enough for the diagnosis of Rett syndrome. Diagnosis requires either the presence of the mutation (a molecular diagnosis) or fulfillment of the diagnostic criteria (a clinical diagnosis, based on signs and symptoms that you can observe) or both. Below is a list of labs to share with your ordering physician that can do the MECP2 sequencing + deletion analysis, and the list of diagnostic criteria.

October is Down Syndrome Awareness Month

Down Syndrome Awareness Month is chance to spread awareness, advocacy and inclusion throughout the community. During the month of October, we celebrate  individuals with Down syndrome and make people aware of their abilities and accomplishments

What Is Down Syndrome?
In every cell in the human body there is a nucleus, where genetic material is stored in genes.  Genes carry the codes responsible for all of our inherited traits and are grouped along rod-like structures called chromosomes.  Typically, the nucleus of each cell contains 23 pairs of chromosomes, half of which are inherited from each parent. Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21.

This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome. A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm – although each person with Down syndrome is a unique individual and may possess these characteristics to different degrees, or not at all.

How Common is Down Syndrome?
One in every 691 babies in the the United States is born with Down syndrome, making Down syndrome the most common genetic condition. Approximately 400,000 Americans have Down syndrome and about 6,000 babies with Down syndrome are born in the United States each year.

What Causes Down Syndrome?
Regardless of the type of Down syndrome a person may have, all people with Down syndrome have an extra, critical portion of chromosome 21 present in all or some of their cells.  This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.

The cause of nondisjunction is currently unknown, but research has shown that it increases in frequency as a woman ages.  However, due to higher birth rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age.

There is no definitive scientific research that indicates that Down syndrome is caused by environmental factors or the parents’ activities before or during pregnancy.

The additional partial or full copy of the 21st chromosome which causes Down syndrome can originate from either the father or the mother. Approximately 5% of the cases have been traced to the father.

When Was Down Syndrome Discovered?
For centuries, people with Down syndrome have been alluded to in art, literature and science. It wasn’t until the late nineteenth century, however, that John Langdon Down, an English physician, published an accurate description of a person with Down syndrome. It was this scholarly work, published in 1866, that earned Down the recognition as the “father” of the syndrome. Although other people had previously recognized the characteristics of the syndrome, it was Down who described the condition as a distinct and separate entity.

In recent history, advances in medicine and science have enabled researchers to investigate the characteristics of people with Down syndrome. In 1959, the French physician Jérôme Lejeune identified Down syndrome as a chromosomal condition. Instead of the usual 46 chromosomes present in each cell, Lejeune observed 47 in the cells of individuals with Down syndrome. It was later determined that an extra partial or whole copy of chromosome 21 results in the characteristics associated with Down syndrome. In the year 2000, an international team of scientists successfully identified and catalogued each of the approximately 329 genes on chromosome 21. This accomplishment opened the door to great advances in Down syndrome research.

World Heart Day

World Heart Day

World Heart Day was founded in 2000 to inform people around the globe that heart disease and stroke are the world’s leading causes of death, claiming 17.3 million lives each year.

World Heart Day is an annual event which takes place on 29 September every year. Each year’s celebrations have a different theme, reflecting key issues and topics relating to heart health. The theme this year is: Heart-Healthy Environments.

For more information please visit the World Heart Federation’s Website!

7th Annual Morgan’s Ride Is Tomorrow

7th Annual Morgan's Ride

Sunday September 27, 2015
9:30am – 6:00pm
Hilltop AA Club

Pottle St, Kingston, Massachusetts 02364
Please join us for this ride. A 25 mile ride thought the back roads of the South Shore. Live band, food, raffles and more.. Funds raised go to the Morgan’s Fund. To help the fight against FOP.
$20 PER PERSON.

For more information please visit the Facebook Page

Lymphoma Awareness

What Is Lymphoma?
Lymphoma is a group of cancers that begins in the lymphatic system. The function of the lymphatic system is to drain excess tissue fluid called lymph. The lymphatic system also contains blood cells known as lymphocytes, which are important in fighting infection. Lymphoma is the uncontrolled growth of lymphocytes.

What Are the Types of Lymphoma?
There are two types of lymphoma: Hodgkin’s and Non-Hodgkin’s Lymphoma.

  • Hodgkin’s Lymphoma is recognized by the presence of special cells that can be seen under the micros cope, called the Reed-Sternberg cell. Only 12.5% of all lymphomasare the Hodgkin’s type.
  • Non-Hodgkin’s Lymphoma is the most common type of lymphoma and is divided into many groups of lymphatic cancers. There are many different types of Non-Hodgkin’s Lymphoma.
What Are the Key Statistics About Lymphoma?
  • In the year 2015, about 80,900 people will be diagno sed with lymphoma. About 71,850 are expected to have the Non-Hodgkin’s type and about 9,050 for the Hodgkin’s type of lymphoma. Approximately 20,940 people will die of the disease this year.
What Are the Signs and Symptoms of Lymphoma?
  • A swelling of lymph nodes that does not cause pain. Lymph nodes are groups of cells found along the path of lymphatic vessels. They filter the lymphatic fluid and remove harmful substances. The most common sites of lymph node swellings are in the neck, armpit, groin, or the abdomen.
  • General symptoms can include fever, sweating, fatigue, loss of appetite, and bony pain.
  • There are no known strategies to prevent lymphoma.
What Are the Causes of Lymphoma?
  • In most cases, the cause of lymphoma remains unknown.
  • Patients with HIV (Human Immunodeficiency Virus) have a higher risk of developing lymphoma.
  • Stomach lymphoma can be caused by an infection in the stomach called Helicobacter Pylori. This infection is sometimes found in people that have stomach ulcers.

Leukemia Awareness

What Is Leukemia?
Leukemia is a cancer of the white blood cells, which help fight infection. It is caused by the uncontrolled growth of these cells. Leukemia starts in the bone marrow,
which is the spongy part inside the bones where blood cells are made. The cancer cells spread to the blood that circulates in the arteries and veins.
What Are the Key Statistics About Leukemia?
  • The American Cancer Society estimates that 54,270 people will be diagnosed with leukemia this year.
  • About 24,450 people are expected to die from leukemia in the year 2015.
  • Leukemia is commonly thought of as a childhood disease, yet it is diagnosed 10 times more often in adults
What Are the Types of Leukemia?
  • Based on the time it takes one to develop the disease, leukemia has two forms,acute and chronic leukemia.
  • Acute leukemia begins over a short period of time. In acute leukemia, there is a fast growth of immature cells in the bone marrow and peripheral blood.
  • Chronic leukemia develops over a longer period of time. Compared to acute leukemia, it has more mature cells in the bone marrow and peripheral blood.
  • Based on the type of blood cells, leukemia is divided into lymphocytic and myelogenous leukemia.
What Are the Signs and Symptoms of Leukemia?
  • There are no exact signs and symptoms of leukemia.
  • General symptoms include fatigue, or lack of energy, and flu-like symptoms including fever.
  • A loss of appetite may also occur.
  • Shortness of breath when active and a pale color of the skin and mucous membranes (this includes the lining of the inside of the nose and mouth). These symptoms are related to anemia, which is a decrease in the red blood cells that carry oxygen.
  • Easy bruising and bleeding due to a drop in the platelet count. Platelets are part of the blood cells that help form blood clots.Poor wound healing and infections.
  • This is because many of the white cells are immature and therefore not able to do their job.
What Are the Causes of Leukemia?
  • The exact cause of leukemia is not known.
  • In very rare cases, chemotherapy or radiation therapy used to treat one cancer leads to leukemia.
  • There are no known ways to prevent leukemia.

World Alzheimer’s Day

World Alzheimer’s Day, September 21st of each year, is a day on which Alzheimer’s organizations around the world concentrate their efforts on raising awareness about Alzheimer’s and dementia. Alzheimer’s disease is the most common form of dementia, a group of disorders that impairs mental functioning.

Every 68 seconds, someone develops Alzheimer’s disease. At current rates, experts believe the number of Americans living with Alzheimer’s will quadruple to as many as 16 million by the year 2050.

Alzheimer’s disease is often called a family disease, because the chronic stress of watching a loved one slowly decline affects everyone. 5.4 million Americans are living with Alzheimer’s. Alzheimer’s disease is the sixth-leading cause of death in the United States and the only cause of death among the top 10 in the United States that cannot be prevented, cured or even slowed. With the increases in life spans and baby boomers coming of age, support for Alzheimer’s research is more critical to our families than ever.

September is Childhood Cancer Awareness Month

September is Childhood Cancer Awareness Month

Did you know?:

  • 1 in every 285 children in the U.S. will be diagnosed with cancer
  • In the U.S., one out of every five children with cancer will not survive
  • The vast majority of kids who do survive will suffer long-term side effects
  • 14,583 kids will be diagnosed with cancer this month alone

And every single one of them is hoping that the next treatment is the one that will save their life.

For more information you can visit St. Jude’s Website

Things You Should Know Before Renting a Wheelchair Accessible Van

Whether your own wheelchair accessible vehicle is undergoing repairs or modifications or you’re testing the adaptive automobile waters before taking the plunge with the purchase of one, renting a Wheelchair Accessible Van is an affordable, convenient and comfortable way of improving your mobility.

If you’re looking to rent this type of vehicle, these are some good tips to keep in mind.

How Much Does It Cost To Rent A Handicap Van?
If you’re all about saving your pennies, there are many ways to reduce the cost of renting a wheelchair accessible van. Here are just a few:

  • Avoid renting an accessible vehicle airport. Enjoy lower taxes and minimal fees by going to a dealer or rental agency outside the airport grounds.
  • Reserve online whenever possible to take advantage of special offers.
  • Fill up the tank before returning the vehicle. More often than not, this will be less expensive than paying the fill-up fee or pre-paying for gas at the rental agency.
  • Don’t double up on insurance. If your personal auto insurance already covers you for rentals, make sure you don’t sign up for redundant coverage.

Where to Go
Many mobility dealers maintain a fleet of accessible cars or conversion vans for rental purposes. Identify and contact the location nearest you to find out if they have handicap vehicles available to meet your needs. There are also a number of companies that specialize in accessible rental vehicles.

When to Rent
A wheelchair accessible van or car can transform the lives of people with disabilities or temporary mobility impairment. Renting a wheelchair accessible vehicle can be particularly helpful when:

  • Your current wheelchair accessible vehicle requires repairs or maintenance over a period of multiple days.
  • You’re going on a road trip or long ride – a rented wheelchair accessible vehicle can make these much more comfortable. Even if you own a wheelchair accessible vehicle, you might still consider renting a vehicle in order to avoid putting the mileage and wear on your own van.
  • A loved one or family member with a disability visits. If you don’t own an accessible vehicle, renting a wheelchair accessible vehicle can facilitate transporting your friends and family.

Rye’s Syndrome Awareness

Reye’s Syndrome, a deadly disease, strikes swiftly and can attack any child, teen, or adult without warning. All body organs are affected with the liver and brain suffering most seriously. While the cause and cure remain unknown, research has established a link between Reye’s Syndrome and the use of aspirin and other salicylate containing medications, over the counter products, and topical use products.

Reye’s Syndrome is a two-phase illness because it is almost always associated with a previous viral infection such as influenza (flu), cold, or chicken pox. Scientists do know that Reye’s Syndrome is not contagious and the cause is unknown. Reye’s Syndrome is often misdiagnosed as encephalitis, meningitis, diabetes, drug overdose, poisoning, Sudden Infant Death Syndrome, or psychiatric illness.

Reye’s Syndrome tends to appear with greatest frequency during January, February, and March when influenza is most common. Cases are reported in every month of the year. An epidemic of flu or chicken pox is commonly followed by an increase in the number of cases of Reye’s Syndrome.

When Reye’s Syndrome develops, it typically occurs when a person is beginning to recover from a viral illness.

Abnormal accumulations of fat begin to develop in the liver and other organs of the body, along with a severe increase of pressure in the brain. Unless diagnosed and treated successfully, death is common, often within a few days, and even a few hours. A person’s life depends upon early diagnosis. Statistics indicate an excellent chance of recovery when Reye’s Syndrome is diagnosed and treated in its earliest stages. The later the diagnosis and treatment, the more severely reduced are the chances for successful recovery and survival.

August is National Spinal Muscular Atrophy Awareness Month

Since 1996, Spinal Muscular Atrophy Awareness Month has worked to increase awareness of this condition, hoping that a boost in the public’s knowledge about SMA will improve resources for research and provide better care for patients.

What can YOU do to help?
As with any cause, getting the message out to the public is the best way to help. Here are a few ways through which you can let your family, friends and colleagues know about SMA Awareness Month.

Host an Event
Whether it’s a picnic at the park or a fundraiser at your library, an event can help promote SMA Awareness Month to a large number of people. Look into posting your event on your community’s calendar, in order to attract an even larger turnout.

Display Promotional Materials
To help enhance awareness events, you can choose to make or purchase promotional materials containing information about SMA, organizations working to find a cure, and ways to donate. Some families and groups have come up with creative ways to display informational materials, like posting ribbons with SMA facts throughout their neighborhood!

Spread the Word
If you are asked questions regarding SMA or your efforts during awareness month (or anytime of the year!), take the opportunity to educate others about the disease. Share all the knowledge you can and instruct those around you on how they, too, can help.

Donate
While this may not be a possibility for us all, monetary contributions can directly go towards funding life-saving research and scientific efforts. Whenever possible, make a donation to support the battle against SMA.

The efforts of those involved in Spinal Muscular Atrophy Awareness Month can help advance the search for a treatment or cure for those living with the disease. However you choose to get involved, we urge you to support this cause.

Ice Bucket Challenge: Raising Money and Awareness for ALS

Ice Bucket Challenge- Raising Money and Awareness for ALS

Perhaps you’ve seen it online, on your Facebook feed, or across popular morning shows in recent days – the ice bucket challenge! Individuals are taking to media, volunteering to have buckets of ice water poured over their heads to raise money and awareness for ALS, also known as Lou Gehrig’s Disease.

What is ALS?
ALS stands for Amyotrophic Lateral Sclerosis (ALS), but is more commonly referred to as “Lou Gehrig’s Disease.” The disease is characterized by the ALS Association as neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Individuals living with ALS suffer from degenerative loss of motor skills, muscle loss, and can even lead to total paralysis.

Some early symptoms can include increasing muscle weakness, especially in the arms and legs, and loss of speech, difficulty swallowing or breathing. Learn more about the disease at www.alsa.org.

While there is currently no cure for ALS, the disease is 100% fatal. There is currently one medication and others in trial period that offer hope to those living with the disease and help slow down symptoms.

Who started the Ice Bucket Challenge?
The ice bucket challenge campaign was started by Pat Quinn, who became an ALS ambassador after being diagnosed with the disease himself. He got the idea from other similar “challenges” that people were doing and then posting online and recognized the power social media could have in spreading awareness and raising money for those living with the disease every day.

Since he kicked off the campaign, celebrities like Justin Timberlake, the cast of Good Morning America, Michael Strahan, Josh Ramsay, the Patriots and others have been challenging each other to “take the plunge” and spread the news.

How is the challenge impacting the Disability community?
Thanks to the ice bucket challenge, the ALS Association has reportedly received $4 million in donations between July 29 and August 12 and have welcomed more than 70,000 new donors! Contributions will go towards finding a cure for ALS while funding the highest quality of care for people living with the disease.

The ALS community is hoping the increased awareness and funds could lead to a new breakthrough in fighting for the cause. Even those who are not able to donate have helped raise awareness which could potentially help groups like the ALS Association expedite the extensive collaboration required between individuals, medical institutions, and testing labs which could help lead to a potential cure for the disease and help improve the quality of life for those living with it.

Lewy Body Dementia

What Is LBD?
LBD is not a rare disease. It affects an estimated 1.3 million individuals and their families in the United States. Because LBD symptoms can closely resemble other more commonly known diseases like Alzheimer’s and Parkinson’s, it is currently widely underdiagnosed. Many doctors or other medical professionals still are not familiar with LBD.LBD is an umbrella term for two related diagnoses. LBD refers to both Parkinson’s disease dementia and dementia with Lewy bodies. The earliest symptoms of these two diseases differ, but reflect the same underlying biological changes in the brain. Over time, people with both diagnoses will develop very similar cognitive, physical, sleep, and behavioral symptoms.While it may take more than a year or two for enough symptoms to develop for a doctor to diagnose LBD, it is critical to pursue a formal diagnosis. Early diagnosis allows for important early treatment that may extend quality of life and independence.LBD is a multisystem disease and typically requires a comprehensive treatment approach. This approach involves a team of physicians from different specialties who collaborate to provide optimum treatment of each symptom without worsening other LBD symptoms. Many people with LBD enjoy significant improvement of their symptoms with a comprehensive approach to treatment, and some can have remarkably little change from year to year.Some people with LBD are extremely sensitive or may react negatively to certain medications used to treat Alzheimer’s or Parkinson’s in addition to certain over-the-counter medications.

Who was Lewy?
In the early 1900s, while researching Parkinson’s disease, the scientist Friederich H. Lewy discovered abnormal protein deposits that disrupt the brain’s normal functioning. These Lewy body proteins are found in an area of the brain stem where they deplete the neurotransmitter dopamine, causing Parkinsonian symptoms. In Lewy body dementia, these abnormal proteins are diffuse throughout other areas of the brain, including the cerebral cortex. The brain chemical acetylcholine is depleted, causing disruption of perception, thinking and behavior. Lewy body dementia exists either in pure form, or in conjunction with other brain changes, including those typically seen in Alzheimer’s disease and Parkinson’s disease.

Early and accurate diagnosis of LBD, while not always easy to do, is of critical importance for two reasons.

  • First, people with LBD may respond more favorably to certain dementia medications than people with Alzheimer’s, allowing for early treatment that may improve or extend the quality of life for both the person with LBD and their caregiver.
  • Secondly, many people with LBD respond more poorly to certain medications for behavior and movement than people with Alzheimer’s or Parkinson’s, sometimes with dangerous or permanent side effects.

By learning about common forms of dementia, you can help your physician most quickly identify what type of dementia has developed.

Common Forms of Dementia

Alzheimer’s disease symptoms include a progressive loss of recent memory; problems with language, calculation, abstract thinking, and judgment; depression or anxiety; personality and behavioral changes; and disorientation to time and place.

Lewy body dementia (LBD) is an umbrella term for a form of dementia that has three common presentations.

  • Some individuals will start out with a memory or cognitive disorder that may resemble Alzheimer’s disease, but over time two or more distinctive features become apparent leading to the diagnosis of ‘dementia with Lewy bodies’ (DLB). Symptoms that differentiate it from Alzheimer’s include unpredictable levels of cognitive ability, attention or alertness, changes in walking or movement, visual hallucinations, a sleep disorder called REM sleep behavior disorder, in which people physically act out their dreams, and severe sensitivity to medications for hallucinations. In some cases, the sleep disorder can precede the dementia and other symptoms of LBD by decades.
  • Others will start out with a movement disorder leading to the diagnosis of Parkinson’s disease and later develop dementia and other symptoms common in DLB.
  • Lastly, a small group will first present with neuropsychiatric symptoms, which can include hallucinations, behavioral problems, and difficulty with complex mental activities, leading to an initial diagnosis of DLB.

Regardless of the initial symptom, over time all three presentations of LBD will develop very similar cognitive, physical, sleep and behavioral features, all caused by the presence of Lewy bodies throughout the brain.

Vascular dementia is caused by a series of small strokes that deprive the brain of vital oxygen. Symptoms, such as disorientation in familiar locations; walking with rapid, shuffling steps; incontinence; laughing or crying inappropriately; difficulty following instructions; and problems handling money may appear suddenly and worsen with additional strokes. High blood pressure, cigarette smoking, and high cholesterol are some of the risk factors for stroke that may be controlled to prevent vascular dementia.

Frontotemporal dementia (FTD) includes several disorders with a variety of symptoms. The most common signs of FTD include changes in personality and behavior, such as inappropriate or compulsive behavior, euphoria, apathy, decline in personal hygiene, and a lack of awareness concerning these changes. Some forms of FTD involve language and speech symptoms or movement changes.

An experienced clinician within the medical community should perform a diagnostic evaluation. If one is not available, the neurology department of the nearest medical university should be able to recommend appropriate resources or may even provide an experienced diagnostic team skilled in Lewy body dementia.

A thorough dementia diagnostic evaluation includes physical and neurological examinations, patient and family interviews (including a detailed lifestyle and medical history), and neuro-psychological and mental status tests. The patient’s functional ability, attention, language, visuospatial skills, memory and executive functioning are assessed. In addition, brain imaging (CT or MRI scans), blood tests and other laboratory studies may be performed. The evaluation will provide a clinical diagnosis. Currently, a conclusive diagnosis of LBD can be obtained only from a postmortem autopsy for which arrangements should be made in advance. Some research studies may offer brain autopsies as part of their protocols. Participating in research studies is a good way to benefit others with Lewy body dementia.

Medications
Medications are one of the most controversial subjects in dealing with LBD. A medication that doesn’t work for one person may work for another person.

Prescribing should only be done by a physician who is thoroughly knowledgeable about LBD. With new medications and even ‘over-the-counter,’ the patient should be closely monitored. At the first sign of an adverse reaction, consult with the patient’s physician. Consider joining an online caregiver support group to see what others have observed with prescription and over-the-counter medicines.

Risk Factors
Advanced age is considered to be the greatest risk factor for Lewy body dementia, with onset typically, but not always, between the ages of 50 and 85. Some cases have been reported much earlier. It appears to affect slightly more men than women. Having a family member with Lewy body dementia may increase a person’s risk. Observational studies suggest that adopting a healthy lifestyle (exercise, mental stimulation, nutrition) might delay age-associated dementias.

Clinical Trials
The recruitment of LBD patients for participation in clinical trials for studies on LBD, other dementias and Parkinsonian studies is now steadily increasing.

Prognosis and Stages
No cure or definitive treatment for Lewy body dementia has been discovered as yet. The disease has an average duration of 5 to 7 years. It is possible, though, for the time span to be anywhere from 2 to 20 years, depending on several factors, including the person’s overall health, age and severity of symptoms.

Defining the stages of disease progression for LBD is difficult. The symptoms, medicine management and duration of LBD vary greatly from person to person. To further complicate the stages assessment, LBD has a progressive but vacillating clinical course, and one of its defining symptoms is fluctuating levels of cognitive abilities, alertness and attention. Sudden decline is often caused by medications, infections or other compromises to the immune system and usually the person with LBD returns to their baseline upon resolution of the problem.  But for some individuals, it may also be due to the natural course of the disease.

Symptoms

Lewy body dementia symptoms and diagnostic criteria
Every person with LBD is different and will manifest different degrees of the following symptoms. Some will show no signs of certain features, especially in the early stages of the disease. Symptoms may fluctuate as often as moment-to-moment, hour-to-hour or day-to-day. NOTE: Some patients meet the criteria for LBD yet score in the normal range of some cognitive assessment tools. The Mini-Mental State Examination (MMSE), for example, cannot be relied upon to distinguish LBD from other common syndromes.

LBD is a an umbrella term for two related clinical diagnoses, dementia with Lewy bodies and Parkinson’s disease dementia.

The latest clinical diagnostic criteria for dementia with Lewy bodies (DLB) categorizes symptoms into three types, listed below.  A diagnosis of Parkinsons’ disease dementia (PDD) requires a well established diagnosis of Parkinson’s disease that later progresses into dementia, along with very similar features to DLB.  A rather arbirary time cutoff was established to differentiate between DLB and PDD.  People whose dementia occurs before or within 1 year of Parkinson’s symptoms are diagnosed with DLB.  People who have an existing diagnosis of Parkinson’s for more than a year and later develop dementia are diagnosed with PDD.

Central feature

  • Progressive dementia – deficits in attention and executive function are typical. Prominent memory impairment may not be evident in the early stages.

Core features

  • Fluctuating cognition with pronounced variations in attention and alertness.
  • Recurrent complex visual hallucinations, typically well formed and detailed.
  • Spontaneous features of parkinsonism.

Suggestive features

  • REM sleep behavior disorder (RBD), which can appear years before the onset of dementia and parkinsonism.
  • Severe sensitivity to neuroleptics occurs in up to 50% of LBD patients who take them.
  • Low dopamine transporter uptake in the brain’s basal ganglia as seen on SPECT and PET imaging scans. (These scans are not yet available outside of research settings.)

Supportive features

  • Repeated falls and syncope (fainting).
  • Transient, unexplained loss of consciousness.
  • Autonomic dysfunction.
  • Hallucinations of other senses, like touch or hearing.
  • Visuospatial abnormalities.
  • Other psychiatric disturbances.

A clinical diagnosis of LBD can be probable or possible based on different symptom combinations.

A probable LBD diagnosis requires either:

  • Dementia plus two or more core features, or
  • Dementia plus one core feature and one or more suggestive features.

A possible LBD diagnosis requires:

  • Dementia plus one core feature, or
  • Dementia plus one or more suggestive features.

Symptoms Explained
In this section we’ll discuss each of the symptoms, starting with the key word: dementia. Dementia is a process whereby the person becomes progressively confused. The earliest signs are usually memory problems, changes in their way of speaking, such as forgetting words, and personality problems. Cognitive symptoms of dementia include poor problem solving, difficulty with learning new skills and impaired decision making.

Other causes of dementia should be ruled out first, such as alcoholism, overuse of medication, thyroid or metabolic problems. Strokes can also cause dementia. If these reasons are ruled out then the person is said to have a degenerative dementia. Lewy Body Dementia is second only to Alzheimer’s disease as the most common form of dementia.

Fluctuations in cognition will be noticeable to those who are close to the person with LBD, such as their partner. At times the person will be alert and then suddenly have acute episodes of confusion. These may last hours or days. Because of these fluctuations, it is not uncommon for it to be thought that the person is “faking”. This fluctuation is not related to the well-known “sundowning” of Alzheimer’s. In other words, there is no specific time of day when confusion can be seen to occur.

Hallucinations are usually, but not always, visual and often are more pronounced when the person is most confused. They are not necessarily frightening to the person. Other modalities of hallucinations include sound, taste, smell, and touch.

Parkinsonism or Parkinson’s Disease symptoms, take the form of changes in gait; the person may shuffle or walk stiffly. There may also be frequent falls. Body stiffness in the arms or legs, or tremors may also occur. Parkinson’s mask (blank stare, emotionless look on face), stooped posture, drooling and runny nose may be present.

REM Sleep Behavior Disorder (RBD) is often noted in persons with Lewy Body Dementia. During periods of REM sleep, the person will move, gesture and/or speak. There may be more pronounced confusion between the dream and waking reality when the person awakens. RBD may actually be the earliest symptom of LBD in some patients, and is now considered a significant risk factor for developing LBD. (One recent study found that nearly two-thirds of patients diagnosed with RBD developed degenerative brain diseases, including Lewy body dementia, Parkinson’s disease, and multiple system atrophy, after an average of 11 years of receiving an RBD diagnosis. All three diseases are called synucleinopathies, due to the presence of a mis-folded protein in the brain called alpha-synuclein.)

Sensitivity to neuroleptic (anti-psychotic) drugs is another significant symptom that may occur. These medications can worsen the Parkinsonism and/or decrease the cognition and/or increase the hallucinations. Neuroleptic Malignancy Syndrome, a life-threatening illness, has been reported in persons with Lewy Body Dementia. For this reason, it is very important that the proper diagnosis is made and that healthcare providers are educated about the disease.

Other Symptoms
Visuospatial difficulties, including depth perception, object orientation, directional sense and illusions may occur.

Autonomic dysfunction, including blood pressure fluctuations (e.g. postural/orthostatic hypotension) heart rate variability (HRV), sexual disturbances/impotence, constipation, urinary problems, hyperhidrosis (excessive sweating), decreased sweating/heat intolerance, syncope (fainting), dry eyes/mouth, and difficulty swallowing which may lead to aspiration pneumonia.

Other psychiatric disturbances may include systematized delusions, aggression and depression. The onset of aggression in LBD may have a variety of causes, including infections (e.g., UTI), medications, misinterpretation of the environment or personal interactions, and the natural progression of the disease.

Treatment Options

LBD is a multi-system disease and typically requires a comprehensive treatment approach, meaning a team of physicians from different specialties, who collaborate to provide optimum treatment of each symptom without worsening other LBD symptoms.  It is important to remember that some people with LBD are extremely sensitive or may react negatively to certain medications used to treat Alzheimer’s or Parkinson’s in addition to certain over-the-counter medications.

Cognitive Symptoms
Medications called cholinesterase inhibitors are considered the standard treatment for cognitive symptoms in LBD. These medications were developed to treat Alzheimer’s disease. However, some researchers believe that people with LBD may be even more responsive to these types of medications than those with Alzheimer’s.

Movement Symptoms
Movement symptoms may be treated with a Parkinson’s medication called levodopa, but if the symptoms are mild, it may be best to not treat them in order to avoid potential medication side-effects.

Visual Hallucinations
If hallucinations are disruptive or upsetting, your physician may recommend a cautious trial of a newer antipsychotic medication. (Please see WARNING below.)  Of note, the dementia medications called cholinesterase inhibitors have also been shown to be effective in treating hallucinations and other psychiatric symptoms of LBD.

REM Sleep Behavior Disorder (RBD)
RBD can be quite responsive to treatment, so your physician may recommend a medication like melatonin and/or clonazepam.

Neuroleptic Sensitivity
Severe sensitivity to neuroleptics is common in LBD. Neuroleptics, also known as antipsychotics, are medications used to treat hallucinations or other serious mental disorders. While traditional antipsychotic medications (e.g. haloperidol) are commonly prescribed for individuals with Alzheimer’s with disruptive behavior, these medications can affect the brain of an individual with LBD differently, sometimes causing severe side effects (see below). For this reason, traditional antipsychotic medications like haloperidol should be avoided. Some newer ‘atypical’ antipsychotic medications like risperidone may also be problematic for someone with LBD. Quetiapine is preferred by some LBD experts. If quetiapine is not tolerated or is not helpful, clozapine should be considered, but requires ongoing blood tests to assure a rare but serious blood condition does not develop. Hallucinations must be treated very conservatively, using the lowest doses possible under careful observation for side effects.

WARNING:
Up to 50% of patients with LBD who are treated with any antipsychotic medication may experience severe neuroleptic sensitivity, such as worsening cognition, heavy sedation, increased or possibly irreversible parkinsonism, or symptoms resembling neuroleptic malignant syndrome (NMS), which can be fatal. (NMS causes severe fever, muscle rigidity and breakdown that can lead to kidney failure.)

Medication Side Effects
Speak with your doctor about possible side effects. The following drugs may cause sedation, motor impairment or confusion:

  • Benzodiazepines, tranquilizers like diazepam and lorazepam
  • Anticholinergics (antispasmodics), such as oxybutynin and glycopyrrolate
  • Some surgical anesthetics
  • Older antidepressants
  • Certain over-the-counter medications, including diphenhydramine and dimenhydrinate.
  • Some medications, like anticholinergics, amantadine and dopamine agonists, which help relieve parkinsonian symptoms, might increase confusion, delusions or hallucinations.

NOTE: Be sure to meet with your anesthesiologist in advance of any surgery to discuss medication sensitivities and risks unique to LBD. People with LBD often respond to certain anesthetics and surgery with acute states of confusion or delirium and may have a sudden significant drop in functional abilities, which may or may not be permanent.

Possible alternatives to general anesthesia include a spinal or regional block. These methods are less likely to result in postoperative confusion. If you are told to stop taking all medications prior to surgery, consult with your doctor to develop a plan for careful withdrawal.

Non-Medical Treatments

Physical therapy options include cardiovascular, strengthening, and flexibility exercises, as well as gait training. Physicians may also recommend general physical fitness programs such as aerobic, strengthening, or water exercise.

Speech therapy may be helpful for low voice volume and poor enunciation. Speech therapy may also improve muscular strength and swallowing difficulties.

Occupational therapy may help maintain skills and promote function and independence. In addition to these forms of therapy and treatment, music and aroma therapy can also reduce anxiety and improve mood.

Individual and family psychotherapy can be useful for learning strategies to manage emotional and behavioral symptoms and to help make plans that address individual and family concerns about the future.

Support groups may be helpful for caregivers and persons with LBD to identify practical solutions to day-to-day frustrations, and to obtain emotional support from others.

End-of-Life
Planning for the end of life can be a valuable activity for any family. The links below offer general guidance and some specific suggestions for families who face the burden of a disease such as Lewy body dementia.

Advanced Directives – a Caring Connections site with state-specific advanced directives

Caring Connections – home page of consumer Web site about hospice and palliative care managed by the National Hospice and Palliative Care Organization

Palliative Doctors – a Web site for consumers managed by the American Academy of Hospice and Palliative Care about palliative care

August is SMA Awareness Month

August is SMA Awareness month and families and friends around the country are joining together to help increase awareness—not only of SMA, but also of our hope for a treatment and cure.

What is Spinal Muscular Atrophy?
Spinal Muscular Atrophy (SMA) Types I, II, and III belong to a group of hereditary diseases that cause weakness and wasting of the voluntary muscles in the arms and legs of infants and children. The disorders are caused by an abnormal or missing gene known as the survival motor neuron gene 1 (SMN1), which is responsible for the production of a protein essential to motor neurons. Without this protein, lower motor neurons in the spinal cord degenerate and die. The type of SMA (I, II, or III) is determined by the age of onset and the severity of symptoms. Type I (also known as Werdnig-Hoffman disease, or infantile-onset SMA) is evident at birth or within the first few months. Symptoms include floppy limbs and trunk, feeble movements of the arms and legs, swallowing and feeding difficulties, and impaired breathing. Type II (the intermediate form) usually begins 6 and 18 months of age. Legs tend to be more impaired than arms. Children with Type II may able to sit and some may be able to stand or walk with help. Symptoms of Type III (also called Kugelberg-Welander disease) appear between 2 and 17 years of age and include difficulty running, climbing steps, or rising from a chair.  The lower extremities are most often affected.  Complications include scoliosis and chronic shortening of muscles or tendons around joints.

Is there any treatment?
There is no cure for SMA. Treatment consists of managing the symptoms and preventing complications.

What is the prognosis?
The prognosis is poor for babies with SMA Type I. Most die within the first two years. For children with SMA Type II, the prognosis for life expectancy or for independent standing or walking roughly correlates with how old they are when they first begin to experience symptoms – older children tend to have less severe symptoms  Life expectancy is reduced but some individuals live into adolescence or young adulthood.  Individuals with SMA type III may be prone to respiratory infections but with care may have a normal lifespan.

What research is being done?
Between 2003 and 2012, the NINDS piloted the Spinal Muscular Atrophy Project to expedite therapeutics development for this hereditary neurodegenerative disease. The Project was designed to accelerate the research process by identifying drugs that increase the level of SMN protein in cultured cells, so that they could be used as potential leads for further drug discovery and clinical testing. Read more about the history of this pioneering effort and how it led to collaboration with several pharmaceutical and biotechnology companies.

Osteoporosis Awareness

General Facts

  • Osteoporosis is a disease of the bone that makes a person’s bones weak and more likely to break. Approximately 9 million Americans have osteoporosis and another 43 million have low bone density, placing them at increased risk.
  • This means that nearly 60% of adults age 50 and older are at risk of breaking a bone and should be concerned about bone health.
  • One in two women and up to one in four men will break a bone in their lifetime due to osteoporosis. For women, the incidence is greater than that of heart attack, stroke and breast cancer combined.
  • There is no cure for osteoporosis, but there are steps you can take to prevent, slow or stop its progress. Diet, exercise and a healthy lifestyle are keys to preventing and managing the disease.
  • NOF recommends five steps to improve bone health and prevent osteoporosis:
    1. Get the calcium and vitamin D you need every day.
    2. Do regular weight-bearing and muscle-strengthening exercises.
    3. Don’t smoke and don’t drink too much alcohol.
    4. Talk to your healthcare provider about your chance of getting osteoporosis and ask when you should have a bone density test.
    5. Take an osteoporosis medication when it’s right for you.

About Osteoporosis
Osteoporosis is a disease of the bone.

  • Osteoporosis is often called a “silent disease” because you cannot feel your bones getting weaker.
  • You may not even know you have osteoporosis until after you break a bone.

Osteoporosis is serious, even deadly.

  • A woman’s risk of hip fracture is equal to her combined risk of breast, uterine and ovarian cancer.
  • A man is more likely to break a bone due to osteoporosis than he is to get prostate cancer.
  • 24 percent of hip fracture patients age 50 and over die in the year following the fracture.
  • Six months after a hip fracture, only 15 percent of patients can walk across a room unaided.
  • Every year, of nearly 300,000 hip fracture patients, one-quarter end up in nursing homes and half never regain previous function

Osteoporosis is costly.

  • Osteoporosis-related bone breaks cost patients, their families and the healthcare system $19 billion annually.
  • By 2025, experts predict that osteoporosis will be responsible for three million fractures resulting in $25.3 billion in costs.

Osteoporosis is preventable.

  • About 85-90 percent of adult bone mass is acquired by age 18 in girls and 20 in boys.
  • Building strong bones during childhood and adolescence can help prevent osteoporosis later in life.
  • NOF recommends five steps to improve bone health and prevent osteoporosis:
    1. Get the calcium and vitamin D you need every day.
    2. Do regular weight-bearing and muscle-strengthening exercises.
    3. Don’t smoke and don’t drink too much alcohol.
    4. Talk to your healthcare provider about your chance of getting osteoporosis and ask when you should have a bone density test.
    5. Take an osteoporosis medication when it’s right for you.

Osteoporosis is manageable.

  • Although there is no cure for osteoporosis, there are steps you can take to prevent, slow or stop its progress. Eating a healthy diet and exercising regularly can help slow or stop the loss of bone mass and help prevent fractures.
  • About half of osteoporosis-related repeat fractures can be prevented with appropriate treatment.
  • A bone density test is the best way to diagnose osteoporosis and determine a treatment plan. If your T-score is-2.5 or lower, indicating that you have osteoporosis, or if you have other significant risk factors for breaking a bone, talk to your healthcare provider about starting an osteoporosis treatment plan that includes taking an osteoporosis medicine.
  • In choosing an osteoporosis medication, be sure to discuss the risks and benefits of all treatment options with your healthcare provider to determine which treatment plan is best for you.
  • In order for your medicine to work, it’s important to exercise regularly an make sure you get the recommended amount of calcium and vitamin D every day from food and supplements.
  • Once you start taking an osteoporosis medicine, your bone density test by central DXA should be repeated at least every two years to monitor its effects. After starting a new osteoporosis medicine, many healthcare providers will repeat a bone density test after one year.

When is Renting a Wheelchair Van Right for You?

To Fill a Gap During Repairs
When you need to make repairs to your wheelchair accessible vehicle or wheelchair van it is more difficult for you than the average car owner. What do you do when you don’t have the vehicle? Most of us don’t have a second wheelchair van we can use. When the repair is unexpected or more serious than anticipated, how do you manage? Do you cancel and reschedule all your doctors’ visits and planned activities for you and the people you care for? No! Simply make arrangements for a rental van so you can get yours repaired and still go on with your life.

To Accommodate a Visitor Using a Wheelchair
Are you or a wheelchair user you know flying into our area and need to have access to a wheelchair van rental? Would you like to have a grandmother or grandfather or other wheelchair-using relative come and spend some time with you and your family? A wheelchair van rental can give the freedom to come and stay without unnecessary barriers to family fun and mobility.

To Bring a Loved One Out From a Care Facility
For those in a nursing facility for an extended time-whether that is for a week, month or years-and those of us that care for them-visits and outings are critical for keeping spirits up and connections alive. A wheelchair van rental can make these outings better for everyone.

Wheelchair vans are much easier to use and enable most of us to handle getting someone in and out of the vehicle easily and without risk of injury or inconvenience.

Ease of use makes us all more likely to set aside the time and know that we can have a successful outing without the struggle of getting into and out of vehicles that are not wheelchair accessible

To Try a Wheelchair Van Before You Buy One
Buying a wheelchair van is a big decision and requires considerable care in making sure that the vehicle you choose will work for your particular situation. While all wheelchair vans have similarities, the differences are significant. The differences in height, width and shape may not seem like much to some. However, when you are in a wheelchair and have special equipment or physical limitations to accommodate, a couple of inches on one side or the other can be the key to complete happiness with your wheelchair van.

Maybe you think a wheelchair van would help your life but you have not been able to justify the expense. Sometimes trying it out can help you to feel that you are making the right decision. Maybe you will find that a wheelchair van is not right for you because of the fit, your family size or the conditions you drive in. Regardless, renting a wheelchair van can help you to assess that far better than a simple test drive.

When Your Disability is Only Temporary
Access to a wheelchair van can be a lifesaver when you are recovering from an injury or medical procedure that forces you to use a wheelchair for a limited period of time. Whether you have had surgery, or have suffered a broken bone or other injury, even an illness that limits your mobility, having to be in a wheelchair is not easy. Wheelchair van rentals can ensure that this temporary problem does not keep you restricted in your ability to make the most of the situation.

Having a wheelchair van rental accessible during your recovery means that the van is there when you need it. When you want to go for a ride, visit a friend or run to the store…

Using public transportation or medical transportations services limits your convenience and easy access to mobility

When you have recovered and no longer need the vehicle, simply return it to us and go on with your recovery and normal life.

For Doctor’s Visits and Medical Transportation
For the occasional doctor’s visit, using a transportation service may be a reasonable choice. However, when you are going through periods of multiple visits, testing, etc over several days or weeks or have a condition that requires regular, frequent appointments, the convenience of a wheelchair accessible van rental cannot be beat. Financially it will also work out to be less expensive in many situations.

When medical visits have got you running ragged, take some of the load off with a wheelchair van rental scheduled around your needs with the built in flexibility that comes with having it dedicated to you.

Do you want to take a detour on the way home from the doctor? Go out to lunch or do a little shopping? This is the kind of convenience that wheelchair accessible van rentals can provide.

For Special Occasions and Outings
Don’t let access to convenient wheelchair van transportation keep you from bringing your wheelchair-using loved ones to special events like weddings, birthdays, retirements and other “can’t miss” occasions. Wheelchair accessible van rentals enable you or that special person to attend significant occasions in the most convenient, comfortable and affordable manner possible.

For Road Trips and Vacations
Many people take rental wheelchair vans on long trips and vacations. Often, the wheelchair van or handicapped van they have is not large enough or dependable enough for their needs. Even with the excess mileage charges, the overall rental cost can fit into the vacation budget.

Huntington’s Disease Awareness

What is Huntington’s Disease?
Huntington’s disease (HD) is an inherited brain disorder that results in the progressive loss of both mental faculties and physical control. Symptoms usually appear between the ages of 30 to 50, and worsen over a 10 to 25 year period. Ultimately, the weakened individual succumbs to pneumonia, heart failure or other complication.

Everyone has the HD gene but it is those individuals that inherit the expansion of the gene who will develop HD and perhaps pass it onto each of their children.

Presently, there is no cure. Although medications can relieve some symptoms, research has yet to find a means of slowing the deadly progression of HD.

Current estimates are that 1 in every 10,000 Americans has HD and more than 250,000 others are at-risk of having inherited it from a parent. Once thought a rare disease, HD is now considered one of the more common hereditary diseases.

Every person who inherits the expanded HD gene will eventually develop the disease.
Over time, HD affects the individual’s ability to reason, walk and speak

Symptoms Include:

  • Personality changes, mood swings and depression
  • Forgetfulness and impaired judgment
  • Unsteady gait and involuntary movements
  • Slurred speech and difficulty in swallowing

The Scope of HD
Approximately 30,000 Americans have HD, but the devastating effects of the disease touch many more. Within a family, multiple generations may have inherited the disease. Those at-risk may experience tremendous stress from the uncertainty and sense of responsibility. In the community, lack of knowledge about HD may keep friends and neighbors from offering social and emotional support to the family, fostering unnecessary isolation. The Huntington’s Disease

Society of America (HDSA) has a nationwide network that provides support and referrals for individuals with HD and their families.

Genetic Testing for HD
Individuals can be tested for the gene that causes HD. The test may be used to confirm a diagnosis of HD, but may also be used as a predictive test before symptoms arise. Some individuals at-risk for HD feel that it is important to know whether they carry the gene. Others ultimately choose not to be tested. While the actual procedure is simple, the decision to have the test is not. HDSA recommends that persons wishing to undergo presymptomatic testing for HD do so at one of our HDSA Centers of Excellence, or at a testing center with specific training in working with HD. A list of these testing centers is available from HDSA

HD affects both sexes and all races and ethnic groups around the world.
The Decision to test is highly personal and should never be rushed or forced.

Who is At-Risk?
Every child of a parent with HD has a  50/50 chance of inheriting the expanded gene that causes the disease. If the child has not inherited this expanded gene, he or she will never develop the disease and cannot pass it on to their children.

Genetic Information Nondiscrimination Act of 2008 (GINA)
The Genetic Information Nondiscrimination Act (GINA) protects people from discrimination by health insurers and employers on the basis of their DNA information. This federal law also enables individuals to take part in research studies without fear that their DNA information might be used against them by health insurers or in the workplace.

However, GINA protections do not extend to long term care, disability or life insurance policies. Anyone contemplating testing should first consider adding one or more of these types of policies before starting the testing process.

Advocacy
HDSA advocacy works to advance legislation and policy to improve the lives of HD families by raising awareness about HD in the U.S. Congress, by promoting legislation, policy and regulations that would help individuals in the HD community, by educating Federal agencies about HD, and by partnering and collaborating with national organizations that have common goals. Learn more at www.hdsa.org/advocacy.

Join us in the fight against HD
YOU can help HDSA in our efforts to end HD and provide resources for those who must face this disease daily. Both funds and volunteers are needed. Contact the HDSA National Office to find out how YOU can help.

HD does not skip generations; if one does not inherit the expanded gene, one cannot pass it on

An End To HD?
In 1993, researchers identified the gene that causes HD. Since then, research has moved quickly towards developing treatments and, ultimately, a cure. HDSA supports the goals of clinical and basic research at leading research facilities globally.

Clinical and observational trials are an important way you can help to sustain the momentum of HD research and move potential new therapies through the approval process. Visit the Research section of the HDSA website for more information and to find a trial in your area. There are opportunities for all HD family members – gene positive, at-risk, gene negative, and caregivers – to participate.

About HDSA
The Huntington’s Disease Society of America (HDSA) is the largest 501(C)(3) non-profit volunteer organization dedicated to improving the lives of everyone affected by Huntington’s disease. Founded in 1968 by Marjorie Guthrie, wife of folk legend Woody Guthrie who lost his battle with HD, the Society works tirelessly to provide family services, education, advocacy and research to provide help for today, hope for tomorrow to the more than 30,000 people diagnosed with HD and the 250,000 at-risk in the United States.

Where to find help
You are not alone in facing HD. HDSA has developed a nationwide network that includes Chapters and Affiliates, HDSA Centers of Excellence, Support Groups, and Social Workers that are ready to assist you with referrals and resources in your area. To learn more, please visit www.hdsa.org or call 888-HDSA-506.

Research worldwide is working to unlock the mystery of HD and find a cure

Project 22 – Promoted by Team RWB Boston

Project 22

Tuesday, July 28 7:30PM – 9:12PM
$14.00 General
at Landmark Kendall Square Cinema
Bldg. 1900 One Kendall Square, Cambridge, MA, US, 02139

For more information on this event please visit the Website

Click here to view the trailers!

The making of Project 22
Project 22 was a 22 day, 6,500 mile motorcycle awareness campaign from San Francisco to New York City to raise awareness of the high rate of suicides within the Veteran community. As we traveled across the country, we spoke with many Veterans who had contemplated or attempted suicide and asked them for their stories; what led them to it and what brought them out of it. The responses regarding the challenges were in remarkable unison although the hope they found came in many different forms. We were able to explore the therapeutic potential behind sailing, pottery, education, activism, family, service dogs, painting and more.

We also spoke with leading researchers of Traumatic Brain Injury and Post Traumatic Stress, mental health clinicians and educators, as well as, leading experts in warrior culture and combat stress. Coupled with the insightful and potentially life changing information we captured in interviews, we filmed the motorcycle awareness campaign, including camping, several organized rides and our final ride being escorted into World Trade Center by the Port Authority Police Department. We gathered incredible footage and news coverage in multiple cities, including Pittsburgh and New York.

Project 22 was entirely crowd-funded via an IndieGoGo campaign and private donations. In addition, the crew was offered food, lodging and assistance wherever we rode, helping keep production costs low. Project 22 is fiscally sponsored by From The Heart Productions, a 501(c)3 non-profit organization, while Medicinal Missions applies for independent non-profit status. All donations are tax-deductible and are made payable to From The Heart Productions via the PayPal link on our website or by check to: From The Heart Productions 1455 Mandalay Beach Road Oxnard, CA 93035-2845

From The Heart has been successfully funding films since inception in 1993 under the 501(c)3 Internal Revenue Code of 1954. Also classified as a public charity under section 509 (a) (2) of the Code. Monetary donations to the Fiscal Sponsorship Program qualify as charitable contributions under the U.S. Tax Code for 95 444 5418.

Government Grants for People with Disabilities

Find government grants and financing for handicap vehicles for people with disabilities nationwide. Money can be located with a little patience and a lot of research through various government programs. We’ve compiled a list of the most well-known government grant programs to assist your search for help funding a wheelchair van.When paying for a handicap van, you can use money from government grant programs for people with disabilities, as well other funding resources like disability grants, loans, fundraiser money, foundation endorsements, or any other funding source. We’ll work with your chosen foundations or any government grant program, after they verify financial assistance, to get you on the road!

To learn more about applying for wheelchair van grant funding to buy a handicap van or convert a pre-owned minivan, read “How to Apply for a Grant for Wheelchair Vans, Mobility Equipment, or Minivan Conversions.”

Government Wheelchair Van Financing Resources
Fund your wheelchair van with these government grant programs provided by the U.S. government and locally in your state.

Administration for Children & Families
On this website, new funding opportunities are displayed as they become available.

Grants.gov
The U.S. government resource listing federal grants available.

Medicaid
Sometimes provides assistance when children or other special circumstances are involved.

Medicaid/Department of Human Services (DHS)
Children are screened as part of the Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) program of Medicaid. Under Medicaid’s “rehabilitative services,” people often receive handicap van or lift funding to achieve their “best possible functional levels.”

Vocational Rehabilitation (VR)
Located within each state’s Department of Human Services (per state), helps you prepare for work, train for a job, find a job, or keep a job as early as high school. Services are prioritized according to the severity of the disability.

Department of Assistive and Rehabilitative Services (DARS)
Check your state’s branch for grant availability.

Division of Developmental Services (DDS)
Check your state’s branch for grants.Those with Supplemental Security Income (SSI) benefits from the Social Security Administration can contact the agency about its Plan to Achieve Self Support(PASS). A PASS plan sets aside income to buy equipment or services in a way that keeps income, as well as resources, below the SSI eligibility cut-off so there are no reductions in benefits. The emphasis is on whether the handicap van or equipment will help the SSI recipient become vocationally self-sufficient. It’s important for an individual to contact and receive the approval of Social Security before setting up a PASS plan. Once money has been set aside for a PASS, spending it on something else can result in the loss of SSI benefits.Please note: You can use multiple sources of funding that include grants, loans, and other funding assistance. If you’re unable to find government grants for people with disabilities or need to acquire more money to help pay for your wheelchair van and/or mobility needs, check out more opportunities at our mobility finance page.

Asperger Syndrome

About AS:

  • It is a neurological disorder that affects the way information is processed in the brain.
  • AS is a hidden disability. Many people appear very competent, but they have difficulties in the areas of communication and social interaction.
  • AS has a genetic and hereditary component and may have additional or interactive environmental causes as yet unknown.
  • AS is a developmental disability. All individuals have social/emotional delays, but continued growth seems to be life-long.
  • The incidence of AS is thought to be 1 in 250. As many as 50% of people with AS may be undiagnosed.
  • There are currently four males diagnosed with AS for every one female, but the true ratio may be as high as one female for every two males.

AS affects each person differently, although there is a core set of features that most people with AS have, to different extents:

  • People with AS have normal to very high intelligence and have good verbal skills.
  • Challenges with the use and understanding of language in a social context.
  • Trouble understanding what someone else is thinking and feeling (called theory of mind or perspective taking).
  • Needing to be taught social behavior that is “picked up on” intuitively by others.
  • Difficulty understanding non-verbal cues such as hand movements, facial expressions, and tone of voice.
  • Challenges with organization, initiation, prioritizing, all called executive functioning tasks.
  • Focusing on small details rather than the bigger picture
  • Most people with AS have intense interest areas such as movies, geography, history, math, physics, cars, horses, dogs or reptiles. These interest areas change every 3 months to several years
  • Friendships are usually formed through mutual interest areas or activities.
  • Most people with AS view the world in black and white with difficulty compromising or seeing the gray areas.
  • Most individuals with AS describe themselves as feeling different, like aliens in our world.
  • Anxiety and/or depression are major components for many people with AS and may affect their ability to function.
  • Some individuals with AS have extreme and debilitating hyper- or hypo-sensitivity to light, noise, touch, taste, or smell. The environment can have a profound impact on their ability to function.

Safety Tips For The 4th of July Weekend!

It’s time for Fourth of July celebrations – fireworks, a backyard barbecue, maybe a trip to the beach. Whatever you have planned, we want you to enjoy the holiday and be safe!

Firework Safety
The safest way to enjoy fireworks is to attend a public fireworks show put on by professionals. Stay at least 500 feet away from the show. Many states outlaw most fireworks, but if you plan to set fireworks off at home, you should follow these safety steps:

  • Never give fireworks to small children, and always follow the instructions on the packaging.
  • Keep a supply of water close by as a precaution.
  • Make sure the person lighting fireworks always wears eye protection.
  • Light only one firework at a time and never attempt to relight “a dud.”
  • Store fireworks in a cool, dry place away from children and pets.
  • Never throw or point a firework toward people, animals, vehicles, structures or flammable materials.
  • Leave any area immediately where untrained amateurs are using fireworks.

Barbeque Safety
Every year people in this country are injured while using backyard charcoal or gas grills. Follow these steps to safely cook up treats for your backyard barbecue:

  • Always supervise a barbecue grill when in use.
  • Never grill indoors – not in your house, camper, tent, or any enclosed area.
  • Make sure everyone, including the pets, stays away from the grill.
  • Keep the grill out in the open, away from the house, the deck, tree branches, or anything that could catch fire.
  • Use the long-handled tools especially made for cooking on the grill to keep the chef safe.
  • Never add charcoal starter fluid when coals have already been ignited.
  • Always follow the manufacturer’s instructions when using grills.

Beach Safety
If your time at the beach you should listen to all the instructions and orders given by lifeguards. Other safety tips include:

  • Keep alert for local weather conditions. Check to see if any warning signs or flags are posted.
  • Swim sober and always swim with a buddy.
  • Have young children and inexperienced swimmers wear a Coast Guard-approved life jacket.
  • Protect your neck – don’t dive headfirst. Walk carefully into open waters.
  • Protect your feet – the sand can burn them and glass and other sharp objects can cut them.
  • Watch out for aquatic life. Water plants and animals may be dangerous. Avoid patches of plants and leave animals alone.
  • Keep a close eye and constant attention on children and adults while at the beach. Wave action can cause someone to lose their footing, even in shallow water.

Rip currents are responsible for deaths on our nation’s beaches every year, and most of the rescues are performed by lifeguards. Any beach with breaking waves may have rip currents. Be aware of the danger of rip currents and remember the following:

  • If someone is caught in a rip current, swim parallel to the shore until out of the current. Once free, turn and swim toward shore. If that’s not possible swim to the shore, float or tread water until free of the rip current and then head toward the shore.
  • Stay at least 100 feet away from piers and jetties. Permanent rip currents often exist near these structures.

Sun Protection
Limit exposure to direct sunlight between 10 a.m. and 4 p.m., and wear a broad-spectrum sunscreen with a protection factor of at least 15. Reapply sunscreen often. Remember to drink plenty of water regularly, even if not thirsty. Avoid drinks with alcohol or caffeine in them. Protect your eyes by wearing sunglasses that will absorb 100 percent of UV sunlight.

During hot weather, watch for signs of heat stroke—hot, red skin; changes in consciousness; rapid, weak pulse; rapid, shallow breathing. If it’s suspected someone is suffering from heat stroke:

  • Call 9-1-1 and move the person to a cooler place.
  • Quickly cool the body by applying cool, wet cloths or towels to the skin (or misting it with water) and fanning the person.
  • Watch for signs of breathing problems and make sure the airway is clear. Keep the person lying down.

U.S. Coast Guard Auxiliary: A Proud Tradition, A Worthy Mission

U.S. Coast Guard Auxiliary - A Proud Tradition, A Worthy Mission

For over 70 years, tens-of-thousands of men and women of the Coast Guard Auxiliary have spent millions of volunteer hours helping the Coast Guard carry out its mission. They have saved countless lives through their work, on and off the water. Auxiliarists are probably best known for educating the public through their boating safety classes and vessel safety checks. Yet, they do much more. The Coast Guard Authorization Act of 1996 allows the Auxiliary to assist the Coast Guard in performance of any Coast Guard function, duty, role, mission or operation authorized by law and authorized by the Commandant.

When the Coast Guard “Reserve” was authorized by act of Congress on June 23, 1939, the Coast Guard was given a legislative mandate to use civilian volunteers to promote safety on and over the high seas and the nation’s navigable waters. The Coast Guard Reserve was then a non-military service comprised of unpaid, volunteer U.S. citizens who owned motorboats or yachts.

Two years later, on Feb. 19, Congress amended the 1939 act with passage of the Auxiliary and Reserve Act of 1941. Passage of this act designated the Reserve as a military branch of the active service, while the civilian volunteers, formerly referred to as the Coast Guard Reserve, became the Auxiliary. So, Feb. 19 is formally recognized as the birth of the Coast Guard Reserve while June 23 is recognized as birthday of the Coast Guard Auxiliary.

For more information please visit the website

35th Annual National Veterans Wheelchair Games

If you’re looking for a summer vacation getaway full of excitement, look no further than the National Veterans Wheelchair Games held this year in Dallas, Texas. Whether you’re taking the whole family to experience these acts of courage and strength, or making a stop on your summer accessible road trip, this event supports and benefits our country’s veterans by encouraging a spirit of healthy activity and friendship.

The History
Since the Games began over 30 years ago in 1981, the event has grown from only 74 competitors to over 500 in 2014. This event is presented each year by the Department of Veterans Affairs (VA) and Paralyzed Veterans of America, with additional support from numerous organizations, corporate and community sponsors. Wheelchair sports had their start in the aftermath of World War II, when young disabled Veterans began playing wheelchair basketball in VA hospitals throughout the U.S. Since 1980, when the VA’s efforts brought about an enhanced awareness of the rehabilitative value of wheelchair athletics, VA therapists have used wheelchair sporting as a therapeutic tool for supporting Veterans with disabilities.

The Location
The event has moved from city to city over the years and 2015 marks the 35th annual NVWG. The event is being held in Dallas, a city with much to offer as host, including cultural districts, the best restaurants, hotels and museums for something to do while you’re not at the games. This years games are being held June 21–26, so if you’re looking to turn up the heat this summer, Dallas is the perfect place to be!

The Events
Veterans can compete in 18 different events at the games, including: 9-ball, air rifle, hand cycling, quad rugby, softball, track, table tennis, weightlifting, and many more. Athletes are classified by degree of disability and then further into divisions. Although registration for this years event ended April 15, if you are a U.S. military service veteran who uses a wheelchair due to mobility impairments, be on the lookout early next year to register!

If you aren’t a veteran, or just happened to miss registration but still want to be involved with this event you can always sponsor the games, or volunteer! More than 3,000 local volunteers are required to assist with all aspects of the games, from helping with transportation, to event set-up, water distribution, assistance with meals, and much, much more. Summer time calls for travel and excitement, and what more of a rewarding way to spend your summer days then traveling to Dallas to support our veterans.

Marfan Syndrome Awareness

Marfan syndrome is a genetic disorder that affects the body’s connective tissue. Connective tissue holds all the body’s cells, organs and tissue together. It also plays an important role in helping the body grow and develop properly.

Connective tissue is made up of proteins. The protein that plays a role in Marfan syndrome is called fibrillin-1. Marfan syndrome is caused by a defect (or mutation) in the gene that tells the body how to make fibrillin-1. This mutation results in an increase in a protein called transforming growth factor beta, or TGF-β. The increase in TGF-β causes problems in connective tissues throughout the body, which in turn creates the features and medical problems associated with Marfan syndrome and some related disorders.

Because connective tissue is found throughout the body, Marfan syndrome can affect many different parts of the body, as well. Features of the disorder are most often found in the heart, blood vessels, bones, joints, and eyes. Some Marfan features – for example, aortic enlargement (expansion of the main blood vessel that carries blood away from the heart to the rest of the body) – can be life-threatening. The lungs, skin and nervous system may also be affected. Marfan syndrome does not affect intelligence.

Who has Marfan syndrome?
About 1 in 5,000 people have Marfan syndrome, including men and women of all races and ethnic groups. About 3 out of 4 people with Marfan syndrome inherit it, meaning they get the genetic mutation from a parent who has it. But some people with Marfan syndrome are the first in their family to have it; when this happens it is called a spontaneous mutation. There is a 50 percent chance that a person with Marfan syndrome will pass along the genetic mutation each time they have a child.

Knowing the signs of Marfan syndrome can save lives
People with Marfan syndrome are born with it, but features of the disorder are not always present right away. Some people have a lot of Marfan features at birth or as young children – including serious conditions like aortic enlargement. Others have fewer features when they are young and don’t develop aortic enlargement or other signs of Marfan syndrome until they are adults. Some features of Marfan syndrome, like those affecting the heart and blood vessels, bones or joints, can get worse over time.

This makes it very important for people with Marfan syndrome and related disorders to receive accurate, early diagnosis and treatment. Without it, they can be at risk for potentially life-threatening complications. The earlier some treatments are started, the better the outcomes are likely to be.

Knowing the signs of Marfan syndrome can save lives. Our community of experts estimates that nearly half the people who have Marfan syndrome don’t know it. This is something we are working hard to change.

Scoliosis Awareness

Scoliosis affects 2-3% of the population, or an estimated 7 million people in the United States, and there is no cure.

Scoliosis impacts infants, adolescents, and adults worldwide with little regard to race or socio-economic status. The primary age of onset for scoliosis is 10-15 years old, occurring equally among both genders. However, females are eight times more likely to progress to a curve magnitude that requires treatment.

Scoliosis can impact the quality of life with limited activity, pain, reduced respiratory function, or diminished self-esteem.

The vast majority of people with this condition are not expected to require treatment. The problem is we do not know who will get it, why they get it, which will progress, or how far they will progress. Each year scoliosis patients make more than 600,000 visits to private physician offices, and an estimated 30,000 children are put into a brace for scoliosis, while 38,000 patients undergo spinal fusion surgery.

Despite physicians trying to treat this spinal deformity for centuries, 85% of the cases are classified as idiopathic. Consequently, a scoliosis patient’s life is exacerbated by many unknowns, and treatments therefore that are often ineffective, invasive, and/or costly. Scoliosis patients also have increased health risks due to frequent x-ray exposure.

Scoliosis is a multifactorial disorder, which requires multidisciplinary research and treatment.

For more information please visit The National Scoliosis Foundation’s website

National Congenital Cytomegalovirus Awareness Month

Cytomegalovirus (CMV) is a common virus that infects people of all ages and is usually harmless to people with a healthy immune system. Most people have been exposed to CMV at some point in their lifetime without realizing it. It is estimated that 50-80% of adults in the United States have been infected with CMV by the time they reach 40 years old. Most infections with CMV are “silent” or asymptomatic, meaning most people who are infected with CMV have no signs or symptoms. Once CMV is in a person’s body, it stays there for life. no signs or symptoms occurs when a pregnant woman is exposed to CMV and the CMV passes from the pregnant woman to her unborn child, causing birth defects and developmental disabilities.

Acquired CMV infection is when a person is infected with CMV after birth, during childhood or adulthood.

Acquired CMV
Most healthy people with an acquired CMV infection will generally have few, if any, symptoms or complications from the infection. Because infections among healthy persons are common and typically asymptomatic, efforts to prevent transmission among healthy children and adults are not necessary.

At-Risk Populations
CMV can cause serious problems for people with weakened immune systems (immunocompromised) due to organ transplants, HIV/AIDS infection, chemotherapy, and medications such as glucocorticoids, cytostatics, antibodies, drugs acting on immunophilins, as well as other drugs.

In children and adults with organ transplants, CMV infections are linked with rejection or malfunction of the transplant.

In immunocompromised people, CMV can attack specific organs. Types and symptoms of CMV infections include, but are not exclusive/limited to:

  • Esophagus (CMV esophagitis)
  • Stomach or intestines (CMV gastroenteritis) – Diarrhea, swallowing difficulties or pain, and ulcerations with bleeding
  • Eye (CMV retinitis) – Blindness, floaters in the eye, and visual impairment
  • Lung (CMV pneumonia) – Pneumonia with impaired oxygen uptake (hypoxia)
  • Brain – Coma, encephalitis with behavioral changes, and seizures

Myasthenia Gravis Awareness

Myasthenia Gravis (pronounced My-as-theen-ee-a Grav-us) comes from the Greek and Latin words meaning “grave muscular weakness.” The most common form of MG is a chronic autoimmune neuromuscular disorder that is characterized by fluctuating weakness of the voluntary muscle groups. The prevalence of MG in the United States is estimated to be about 20/100,000 population. However, MG is probably under diagnosed and the prevalence may be higher. Myasthenia Gravis occurs in all races, both genders, and at any age. MG is not thought to be directly inherited nor is it contagious. It does occasionally occur in more than one member of the same family.

The voluntary muscles of the entire body are controlled by nerve impulses that arise in the brain. These nerve impulses travel down the nerves to the place where the nerves meet the muscle fibers. Nerve fibers do not actually connect with muscle fibers. There is a space between the nerve ending and muscle fiber; this space is called the neuromuscular junction.

When the nerve impulse originating in the brain arrives at the nerve ending, it releases a chemical called acetylcholine. Acetylcholine travels across the space to the muscle fiber side of the neuromuscular junction where it attaches to many receptor sites. The muscle contracts when enough of the receptor sites have been activated by the acetylcholine. In MG, there can be as much as an 80% reduction in the number of these receptor sites. The reduction in the number of receptor sites is caused by an antibody that destroys or blocks the receptor site.

Antibodies are proteins that play an important role in the immune system. They are normally directed at foreign proteins called antigens that attack the body. Such foreign proteins include bacteria and viruses. Antibodies help the body to protect itself from these foreign proteins. For reasons not well understood, the immune system of the person with MG makes antibodies against the receptor sites of the neuromuscular junction. Abnormal antibodies can be measured in the blood of many people with MG. The antibodies destroy the receptor sites more rapidly than the body can replace them. Muscle weakness occurs when acetylcholine cannot activate enough receptor sites at the neuromuscular junction.

This Information and more can be found at The Myasthenia Gravis Foundation of America’s website

Post-Traumatic Stress Disorder Awareness

In order to bring greater awareness to the issue of Post-Traumatic Stress Disorder (PTSD), the United States Senate designated June 27th as National PTSD Awareness Day. In addition, June has been designated as PTSD Awareness Month by the National Center for PTSD (NCPTSD).

PTSD is an anxiety disorder resulting from exposure to a single traumatic event or multiple traumatic events, such as sexual or physical assault, natural or man-made disaster, and war-related combat stress. Symptoms of PTSD include persistent intrusive thoughts and distressing dreams about the traumatic event, triggered emotional responses to reminders of the trauma, efforts to avoid thinking or talking about the trauma, and persistent hyper-vigilance for cues that  indicate additional danger or trauma re-occurring.

  • An estimated 70 percent of adults in the United States have experienced a traumatic event at least once in their lives and up to 20 percent of these people go on to develop posttraumatic stress disorder, or PTSD.
  • An estimated 5 percent of Americans—more than 13 million people—have PTSD at any given time.
  • Approximately 8 percent of all adults—1 of 13 people in this country—will develop PTSD during their lifetime.
  • An estimated 1 out of 10 women will get PTSD at some time in their lives. Women are about twice as likely as men to develop PTSD.

Veterans Assisting Veterans Comedy Night

Veterans Assisting Veterans Comedy Night

Friday May 29 at 7:00
VFW Mottolo Post in Revere
10 Garafolo Street Revere, MA

Check out the Facebook Page and join them for a great night of comedy, Pork Roast Dinner and good times to help raise funds towards two truck mounted AmeriDeck lifts. These are needed to aid in the use of Track Chairs for a couple wounded vets. We also hope to promote and raise awareness of what Veterans Assisting Veterans does and is all about. Donation of $20.00 per person collected at the door.

Have You Voted For Your Local Hero?

Click here to view the stories and submit your vote!

What is the Local Heroes Contest?
This is the 4th annual National Mobility Awareness Month. During this month NMEDA has an amazing promotion where they encourage people with disAbilities to embody the spirit of Life Moving Forward by raising awareness of the many life-changing mobility vehicle solutions available today.

NMEDA and their members are mobility advocates dedicated to changing the lives of those living with disAbilities by providing access to quality handicap accessible vehicles and adaptive equipment. Whether you are living with a disAbility or have dedicated your time to helping someone who is, they want to hear your story of perseverance and strength.

For your chance to win a FREE wheelchair accessible vehicle enter NMEDA’s contest by telling them what makes you (or your loved one) a Local Hero!

This year they will be giving away 4 handicap accessible vehicles:

  • one to a caregiver
  • one to a senior (60+)
  • one that is battery powered (for in-town driving only)
  • one in the general category.

Over 18 million people in North America are living with restrictive mobility issues. This is your chance to change the lives of just a few of those triumphing in the face of adversity.

Arthritis Awareness

Arthritis is very common but is not well understood. Actually, “arthritis” is not a single disease; it is an informal way of referring to joint pain or joint disease. There are more than 100 different types of arthritis and related conditions. People of all ages, sexes and races can and do have arthritis, and it is the leading cause of disability in America. Nearly 53 million adults and 300,000 children have some type of arthritis. It is most common among women and occurs more frequently as people get older.

Common arthritis joint symptoms include swelling, pain, stiffness and decreased range of motion. Symptoms may come and go. They can be mild, moderate or severe. They may stay about the same for years, but may progress or get worse over time. Severe arthritis can result in chronic pain, inability to do daily activities and make it difficult to walk or climb stairs. Arthritis can cause permanent joint changes. These changes may be visible, such as knobby finger joints, but often the damage can only be seen on X-ray. Some types of arthritis also affect the heart, eyes, lungs, kidneys and skin as well as the joints.

There are different types of arthritis:

Degenerative Arthritis
Osteoarthritis is the most common type of arthritis. When the cartilage – the slick, cushioning surface on the ends of bones – wears away, bone rubs against bone, causing pain, swelling and stiffness. Over time, joints can lose strength and pain may become chronic. Risk factors include excess weight, family history, age and previous injury (an anterior cruciate ligament, or ACL, tear, for example).

When the joint symptoms of osteoarthritis are mild or moderate, they can be managed by:

  • balancing activity with rest
  • using hot and cold therapies
  • regular physical activity
  • maintaining a healthy weight
  • strengthening the muscles around the joint for added support
  • using assistive devices
  • taking over-the-counter (OTC) pain relievers or anti-inflammatory medicines
  • avoiding excessive repetitive movements

If joint symptoms are severe, causing limited mobility and affecting quality of life, some of the above management strategies may be helpful, but joint replacement may be necessary.

Osteoarthritis can prevented by staying active, maintaining a healthy weight, and avoiding injury and repetitive movements.

Inflammatory Arthritis
A healthy immune system is protective. It generates internal inflammation to get rid of infection and prevent disease. But the immune system can go awry, mistakenly attacking the joints with uncontrolled inflammation, potentially causing joint erosion and may damage internal organs, eyes and other parts of the body. Rheumatoid arthritis and psoriatic arthritis are examples of inflammatory arthritis. Researchers believe that a combination of genetics and environmental factors can trigger autoimmunity. Smoking is an example of an environmental risk factor that can trigger rheumatoid arthritis in people with certain genes.

With autoimmune and inflammatory types of arthritis, early diagnosis and aggressive treatment is critical. Slowing disease activity can help minimize or even prevent permanent joint damage. Remission is the goal and may be achieved through the use of one or more medications known as disease-modifying antirheumatic drugs (DMARDs). The goal of treatment is to reduce pain, improve function, and prevent further joint damage.

Infectious Arthritis
A bacterium, virus or fungus can enter the joint and trigger inflammation. Examples of organisms that can infect joints are salmonella and shigella (food poisoning or contamination), chlamydia and gonorrhea (sexually transmitted diseases) and hepatitis C (a blood-to-blood infection, often through shared needles or transfusions). In many cases, timely treatment with antibiotics may clear the joint infection, but sometimes the arthritis becomes chronic.

Metabolic Arthritis
Uric acid is formed as the body breaks down purines, a substance found in human cells and in many foods. Some people have high levels of uric acid because they naturally produce more than is needed or the body can’t get rid of the uric acid quickly enough. In some people the uric acid builds up and forms needle-like crystals in the joint, resulting in sudden spikes of extreme joint pain, or a gout attack. Gout can come and go in episodes or, if uric acid levels aren’t reduced, it can become chronic, causing ongoing pain and disability.

Diagnosing Arthritis
Arthritis diagnosis often begins with a primary care physician, who performs a physical exam and may do blood tests and imaging scans to help determine the type of arthritis. An arthritis specialist, or rheumatologist, should be involved if the diagnosis is uncertain or if the arthritis may be inflammatory. Rheumatologists typically manage ongoing treatment for inflammatory arthritis, gout and other complicated cases. Orthopaedic surgeons do joint surgery, including joint replacements. When the arthritis affects other body systems or parts, other specialists, such as ophthalmologists, dermatologists or dentists, may also be included in the health care team.

Fibromyalgia Awareness

What Is Fibromyalgia?
Fibromyalgia is a disorder that causes muscle pain and fatigue (feeling tired). People with fibromyalgia have “tender points” on the body. Tender points are specific places on the neck, shoulders, back, hips, arms, and legs. These points hurt when pressure is put on them.

People with fibromyalgia may also have other symptoms, such as:

  • Trouble sleeping
  • Morning stiffness
  • Headaches
  • Painful menstrual periods
  • Tingling or numbness in hands and feet
  • Problems with thinking and memory (sometimes called “fibro fog”).

A person may have two or more coexisting chronic pain conditions. Such conditions can include chronic fatigue syndrome, endometriosis, fibromyalgia, inflammatory bowel disease, interstitial cystitis, temporomandibular joint dysfunction, and vulvodynia. It is not known whether these disorders share a common cause.

What Causes Fibromyalgia?
The causes of fibromyalgia are unknown. There may be a number of factors involved. Fibromyalgia has been linked to:

  • Stressful or traumatic events, such as car accidents
  • Repetitive injuries
  • Illness
  • Certain diseases.

Fibromyalgia can also occur on its own.

Some scientists think that a gene or genes might be involved in fibromyalgia. The genes could make a person react strongly to things that other people would not find painful.

Who Is Affected by Fibromyalgia?
Scientists estimate that fibromyalgia affects 5 million Americans 18 or older. Between 80 and 90 percent of people diagnosed with fibromyalgia are women. However, men and children also can have the disorder. Most people are diagnosed during middle age.

People with certain other diseases may be more likely to have fibromyalgia. These diseases include:

  • Rheumatoid arthritis
  • Systemic lupus erythematosus (commonly called lupus)
  • Ankylosing spondylitis (spinal arthritis).

Women who have a family member with fibromyalgia may be more likely to have fibromyalgia themselves.

How Is Fibromyalgia Treated?
Fibromyalgia can be hard to treat. It’s important to find a doctor who is familiar with the disorder and its treatment. Many family physicians, general internists, or rheumatologists can treat fibromyalgia. Rheumatologists are doctors who specialize in arthritis and other conditions that affect the joints or soft tissues.

Fibromyalgia treatment often requires a team approach. The team may include your doctor, a physical therapist, and possibly other health care providers. A pain or rheumatology clinic can be a good place to get treatment.

What Can I Do to Try to Feel Better?
There are many things you can do to feel better, including:

  • Taking medicines as prescribed
  • Getting enough sleep
  • Exercising
  • Eating well
  • Making work changes if necessary.

What Research Is Being Done on Fibromyalgia?
The NIAMS sponsors research to help understand fibromyalgia and find better ways to diagnose, treat, and prevent it. Researchers are studying:

  • Why people with fibromyalgia have increased sensitivity to pain.
  • Medicines and behavioral treatments.
  • Whether there is a gene or genes that make a person more likely to have fibromyalgia.
  • The use of imaging methods, such as magnetic resonate imaging (MRI), to better understand fibromyalgia.
  • Inflammation in the body and its relationship to fibromyalgia.
  • Nondrug therapies to help reduce pain.
  • Methods to improve sleep in people with fibromyalgia.

Everything You Need to Know About Your Wheelchair Vans A/C

Everything You Need to Know About Your Wheelchair Vans A:C


How does the A/C system work?

We all want the ultimate chill blasting out of our vents; especially when it comes to surviving summers heat. When the A/C system kicks in on those hot, sweaty days, that’s something we all cherish. But, believe it or not, there’s no ice machine inside your van (but at one time ice was used to cool people’s rides down). In fact, the cold air generated by your A/C system is actually hot air with hot gases removed during a multi-step process.

It really is thermodynamics but we’re not get into that. The cliff’s note version is simply about changes in pressure causing changes in temperature. Turn the A/C on and the compressor compresses the system’s refrigerant (Freon) raising its temperature. It loses heat as it flows through the condenser (that second radiator looking thing in front of the radiator). It passes through the receiver/dryer where contaminants and moisture are removed, and then on to the expansion valve/accumulator where the refrigerant is slowed down further, causing it to lose pressure and temperature before it gets to the evaporator. The evaporator is like a mini radiator (not to be confused with the heater core — they are two separate things) inside the dash of your vehicle that gets cold as it further lowers the refrigerants temperature and, additionally, removes moisture from the air. The ventilation system’s blower motor blows air over the cold evaporator and pushes cool air into the passenger compartment. Complicated, but refreshing!

Now that you know what being cool is all about, if you have problems being cool, call us to set up an appointment for an A/C Performance Check.

How often should my A/C be inspected?
You tell us. How’s the air feeling in your wheelchair van? Are you refreshed and cooled with full air flow when your A/C is pumping? Well, if you answered “Yes, I am  cooler than bein’ cool (ICE COLD!),” you can cross A/C inspection off your list.

For all the “No” respondents: do you fall into the “my A/C is not cold enough” or the “it’s taking way too long to cool down,” side of the spectrum? Stop sweating and stop in for an A/C Performance Check, we’ll have you back rolling down those hot summer streets cooler than ever. So chill, your A/C is only an inspection away from cooler days.

How often do I need my A/C system “recharged”?
Only when the cool breeze no longer feels as chilly as you remember. Simple enough. Now, it is true that a well maintained A/C system can go its entire life without needing a recharge. But, that’s if you’re extremely lucky.

If you start noticing your A/C isn’t reaching those refreshingly cool temperatures, have your system inspected. In this situation, most vans Honda, Toyota, Dodge and Ford will be low on Freon. And since the A/C is a sealed system, low Freon is a big sign that something is not right. It could be a small leak that needs attention or possibly part of the A/C is failing – bring it in and we’ll perform an A/C Performance Check and get to the root of the problem. We’ll get you back out there cruising with a nice, cool breeze again.

What is refrigerant?
Typically referred to by the DuPont trade name Freon, the most common Freons are R-12, R-134A, and soon, HFO-1234yf. Freon is pretty similar to motor oil and radiator coolant in that it is a working fluid designed for a specific system; In this case, your car’s A/C system.

Refrigerant is a specially formulated mixture that’s sole purpose for transforming hot air into cold air. It does this by absorbing and releasing heat, ultimately leaving cool air behind.

What exactly is Freon?
Sounds like an automotive A/C history lesson is in order. Well, welcome, pull up a seat and put on your thinking cap.

Freon, better known as R-12, was the primary chlorofluorocarbon (CFC) used in car A/C systems up until it was banned in the mid 1990s after the EPA discovered that it was depleting our planet’s ozone Layer. Talk about toxic.

The auto industry has since switched to the CFC free R-134a. Since the elimination of CFCs from the auto industry —and all industries for that matter—the ozone layer has regained its structure, and the ozone holes caused by CFCs are expected to fully close by about 2050 according to the EPA.

What is the Montreal Protocol? (R-12)
No, this isn’t a treaty you learned about in history class. The Montreal Protocol is actually the official title of the banishment of R-12 (Freon) and other CFC (Chlorofluorocarbons) emitting products from further use anywhere on the planet. And for good reason—CFCs were discovered to be tearing big holes in our ozone layer.

The Montreal Protocol was first signed into law in 1987. If the entire industrial world follows the environmental standards meant to eliminate the use of ozone depleting gases (in place in the United States since 1996), the ozone is said to fully recover by 2050.

The Montreal Protocol is why we now use R-134a instead of the ozone depleting R-12. Starting in 2013, certain U.S. vehicle models will begin transitioning to an even more efficient and safer cooling agent called HFO-1234yf. Talk about a mouthful. HFO-1234yf is said to have almost no environmental impact what-so-ever. And that’s something we can all look forward to.

What’s the difference between R-134a and R-12?
You can say the difference is so big that it has spared the fate of the entire planet. Not to get all deep on your psyche and all, but after it was discovered that R-12 and a whole multitude of products containing Chlorofluorocarbons (CFC) were destroying the ozone layer, environmental scientists immediately started work on an alternative cooling agents free of ozone depleting CFCs. That formula is R-134a: the standard and only refrigerant permitted in automotive A/C systems today.

R-134a, though safer, is not perfect:
Beginning in 2013, R-134a is being replaced by a new formula, HFO-1234yf, available on select U.S. car models. HFO-1234yf is the cleanest, safest refrigerant yet. And what’s even more important is that it has been studied and certified as leaving no impact on the environment what-so-ever. Talk about a great advancement in A/C technology that will help protect our planet for all those driven to cruise the open roads for many years to come.

But why replace R-134a?
Well, although R-134a was designed with the ozone layer in mind, it’s still made with chemicals that can harm the environment if they leak out of your A/C system or are disposed of improperly. With that known fact, international environmental scientists knew an even safer A/C refrigerant was out there waiting to be formulated.

HFO-1234yf is set to become the refrigerant standard:

  • It has been tested and found to leave behind virtually no impact on the environment.
  • If your A/C system should leak, there’s no longer an environmental freak out.

It’s all about the future generations of drivers. Our goal as automotive professionals is to provide the best care for your mobility vehicle while preserving the natural environment of the road your vehicle cruises down for many years to come.

How many parts make up a wheelchair van A/C system?
Your A/C system consists of five major parts, all working together to cool you off and all your passengers.

Most A/C systems are built with:

  • Compressor
  • Condenser
  • Receiver dryer or Accumulator
  • Orifice tube or Expansion valve
  • Evaporator

Your A/C system also consists of hoses and refrigerant charging ports, but the significant work occurs in the five parts listed above. You can learn more about each part that makes up your A/C system starting with the next question. Cool.

What is the A/C compressor?
The compressor is the core, primary part of every A/C system. If you want to stay cool, a working compressor is essential. We’ve seen people try to create cold air with out one. Trust us, it doesn’t work.

The compressor:

  • Pressurizes the refrigerant that cools the air in your mobility van.
  • Senses temperature changes: Compressors monitor and control temperature output with an electrically operated clutch. This clutch turns on and off whenever you change the temperature, choose a different airflow setting or just when plain old air from outside drops or rises in temperature.
  • Powered by the serpentine belt: That winding belt under your hood is responsible for powering many crucial components, including your A/C compressor.

Signs of a worn compressor: Oil or Freon leaks, noise, and erratic or no operation are indications that a compressor may need to be replaced. We can inspect your car for leaks using special refrigerant detecting dyes and devices. You may not be able to see a leak, but our equipment, sometimes referred to as a “sniffer,” can detect—or sniff-out—a chemical leak even if no liquid is visible. Yea, you can say we’re pretty advanced over here.

What is an A/C condenser?
Consider it the master of turning hot refrigerant gasses into liquid. The condenser is mounted at the front of most vehicles, usually in front of the radiator. Air passes through the condenser, turning the hot refrigerant gas into a condensed, cooler refrigerant liquid.

An A/C condenser is:

  • Found In front of the radiator and often referred to as a mini-radiator
  • The master refrigerant cooler. And still champion. The Condenser radiates the hot refrigerant gasses that have entered from the compressor, reducing its temperature and pressure, turning it into a liquid that moves on to the A/C Dryer.

Signs of a worn condenser:

  • Leaks
  • Clogged, corroded or damaged fins or tubes
  • Poor air conditioning performance

What’s a receiver/dryer?
The receiver or dryer is found on vehicles with a thermal expansion valve. It’s the safety net responsible for trapping all harmful debris, moisture and liquids from reaching the compressor and other vital A/C parts.

The roles of the receiver/dryer:

  1. Separates gas from liquid. If liquid isn’t contained in the dryer, it can enter and destroy your compressor (Compressors aren’t designed to handle liquids. Only gas).
  2. Removes moisture. To trap moisture, a desiccant is used. Desiccant is similar to those moisture killing packets you find in the packaging of new electronic devices.
  3. Filters out contaminants. No one wants a contaminated A/C system. Contaminants can lead to accelerated parts wear and damaging corrosion.

Quick fact: If there’s any moisture present in your compressor, it can mix with the Refrigerant and create very damaging corrosive acids.

Symptoms of a worn receiver/dryer:

  • Poor air conditioner performance
  • Moisture on glass and/or inability of defroster to remove moisture from glass and windows

The receiver/dryer must be replaced in the following situations:

  • Anytime the A/C system is opened for repair, the reciever/dryer will need to be replaced.
  • Whenever a technician has determined moisture or debris has permanently damaged your receiver/dryer performance.

What is an accumulator?
An accumulator is similar to a receiver-dryer but only found on vehicles with an orifice tube. If you have an accumulator, that means you don’t have a thermal expansion valve.

The accumulator:

  • Monitors and controls the amount of refrigerant that enters the evaporator.
  • Stores excess Refrigerant so that it cannot enter and damage the compressor.
  • Filters debris and removes moisture from the A/C System.

When to replace the accumulator:

  • Anytime the A/C system is opened for repair, the accumulator will need to be replaced.
  • Whenever a technician has determined moisture or debris has permanently damaged your accumulator’s performance.

What is a thermal expansion valve/orifice tube?
The orifice tube or thermal expansion valve is located between the condenser and the evaporator. Its job is to constantly monitor the pressure and temperature of you’re A/C system in order to determine the exact amount of refrigerant that can safely enter your evaporator. An orifice tube may also contain a fine mesh screen to block contaminants from the rest of the system.

Quick fact: If too much or too little refrigerant enters the evaporator, you could have a big problem on your hands. The proper function of the thermal expansion valve or orifice tube is crucial for successful A/C system operation.

Signs of a worn orifice tube or thermal expansion valve:

  • Poor A/C system performance
  • When a technician has determined it has become dirty or clogged

What is an evaporator?
The evaporator is responsible for cooling air and removing moisture. If cold, refreshing air is hitting your face, your evaporator is working like a champ.

The evaporator:

  • Located right behind your dash. The evaporator is the last and most important stop before cold air can hit your face.
  • Cools air with refrigerant. Low pressure Refrigerant traveling through the evaporator absorbs heat from the passenger compartment dropping the temperature of the evaporator. Air blown over the cool surface of the evaporator then comes out the vents providing the chill you expect.
  • Commences cold air flow. The best and final stage. Cold air should now be blowing out your vents thanks to the hard work of the evaporator.

Symptoms of a worn evaporator:

  • Poor A/C system performance

What is a compressor clutch?
Before the compressor turns on, a special electro-magnetic clutch, conveniently called the “compressor clutch,” is necessary to engage and disengage the compressor cycle. The compressor clutch tells the compressor when to turn on or off so that the Freon (refrigerant) is correctly pressurized for use by the condenser which is then delivered to the evaporator where the chill begins.

Experiencing A/C problems with your Braun, VMI or Eldorado wheelchair van? call to schedule a A/C inspection today.

What is the clutch cycling switch?
The clutch cycling switch senses and controls the temperature in the evaporator core to prevent it from freezing. Although most cars can blow air at temperatures as low as 60 degrees, the temperatures inside the evaporator core can get cold enough to completely freeze the entire core. Not good! The clutch cycle’s job is to make sure the evaporator temperature doesn’t reach the point of glacier temperatures.

Symptoms of a failing clutch cycling switch:

  • Evaporator freezing up
  • Evaporator does not get cold enough

What is a refrigerant charge port?
This is where the magic happens. The refrigerant charge port is the connection point where new refrigerant can enter the system during an A/C system recharge. Your port is usually located on the bigger A/C hose near or on the accumulator.

Caution: Only properly equipped and qualified persons should perform A/C recharging services.

Huntington’s Disease

Huntington’s disease (HD) is an inherited brain disorder that results in the progressive loss of both mental faculties and physical control. Symptoms usually appear between the ages of 30 to 50, and worsen over a 10 to 25 year period. Ultimately, the weakened individual succumbs to pneumonia, heart failure or other complications.

Everyone has the HD gene but it is those individuals that inherit the expansion of the gene who will develop HD and perhaps pass it onto each of their children.

Presently, there is no cure. Although medications can relieve some symptoms, research has yet to find a means of slowing the deadly progression of HD.

Current estimates are that 1 in every 10,000 Americans has HD and more than 250,000 others are at-risk of having inherited it from a parent. Once thought a rare disease, HD is now considered one of the more common hereditary diseases.

Every person who inherits the expanded HD gene will eventually develop the disease.
Over time, HD affects the individual’s ability to reason, walk and speak

Symptoms Include:

  • Personality changes, mood swings and depression
  • Forgetfulness and impaired judgment
  • Unsteady gait and involuntary movements
  • Slurred speech and difficulty in swallowing

The Scope of HD
Approximately 30,000 Americans have HD, but the devastating effects of the disease touch many more. Within a family, multiple generations may have inherited the disease. Those at-risk may experience tremendous stress from the uncertainty and sense of responsibility. In the community, lack of knowledge about HD may keep friends and neighbors from offering social and emotional support to the family, fostering unnecessary isolation.

The Huntington’s Disease Society of America (HDSA) has a nationwide network that provides support and referrals for individuals with HD and their families.

Genetic Testing for HD
Individuals can be tested for the gene that causes HD. The test may be used to confirm a diagnosis of HD, but may also be used as a predictive test before symptoms arise. Some individuals at-risk for HD feel that it is important to know whether they carry the gene. Others ultimately choose not to be tested. While the actual procedure is simple, the decision to have the test is not. HDSA recommends that persons wishing to undergo presymptomatic testing for HD do so at one of our HDSA Centers of Excellence, or at a testing center with specific training in working with HD. A list of these testing centers is available from HDSA

HD affects both sexes and all races and ethnic groups around the world.
The Decision to test is highly personal and should never be rushed or forced.

Who is At-Risk?
Every child of a parent with HD has a  50/50 chance of inheriting the expanded gene that causes the disease. If the child has not inherited this expanded gene, he or she will never develop the disease and cannot pass it on to their children.

Genetic Information Nondiscrimination Act of 2008 (GINA)
The Genetic Information Nondiscrimination Act (GINA) protects people from discrimination by health insurers and employers on the basis of their DNA information. This federal law also enables individuals to take part in research studies without fear that their DNA information might be used against them by health insurers or in the workplace.

However, GINA protections do not extend to long term care, disability or life insurance policies. Anyone contemplating testing should first consider adding one or more of these types of policies before starting the testing process.

Advocacy
HDSA advocacy works to advance legislation and policy to improve the lives of HD families by raising awareness about HD in the U.S. Congress, by promoting legislation, policy and regulations that would help individuals in the HD community, by educating Federal agencies about HD, and by partnering and collaborating with national organizations that have common goals. Learn more at www.hdsa.org/advocacy.

Join us in the fight against HD
YOU can help HDSA in our efforts to end HD and provide resources for those who must face this disease daily. Both funds and volunteers are needed. Contact the HDSA National Office to find out how YOU can help.

HD does not skip generations; if one does not inherit the expanded gene, one cannot pass it on

An End To HD?
In 1993, researchers identified the gene that causes HD. Since then, research has moved quickly towards developing treatments and, ultimately, a cure. HDSA supports the goals of clinical and basic research at leading research facilities globally.

Clinical and observational trials are an important way you can help to sustain the momentum of HD research and move potential new therapies through the approval process. Visit the Research section of the HDSA website for more information and to find a trial in your area. There are opportunities for all HD family members – gene positive, at-risk, gene negative, and caregivers – to participate.

About HDSA
The Huntington’s Disease Society of America (HDSA) is the largest 501(C)(3) non-profit volunteer organization dedicated to improving the lives of everyone affected by Huntington’s disease. Founded in 1968 by Marjorie Guthrie, wife of folk legend Woody Guthrie who lost his battle with HD, the Society works tirelessly to provide family services, education, advocacy and research to provide help for today, hope for tomorrow to the more than 30,000 people diagnosed with HD and the 250,000 at-risk in the United States.

Where to find help
You are not alone in facing HD. HDSA has developed a nationwide network that includes Chapters and Affiliates, HDSA Centers of Excellence, Support Groups, and Social Workers that are ready to assist you with referrals and resources in your area. To learn more, please visit www.hdsa.org or call 888-HDSA-506.

Research worldwide is working to unlock the mystery of HD and find a cure

National Stroke Awareness Month

What Is A Stroke?
A stroke is a “brain attack”. It can happen to anyone at any time. It occurs when blood flow to an area of brain is cut off. When this happens, brain cells are deprived of oxygen and begin to die. When brain cells die during a stroke, abilities controlled by that area of the brain such as memory and muscle control are lost.

How a person is affected by their stroke depends on where the stroke occurs in the brain and how much the brain is damaged. For example, someone who had a small stroke may only have minor problems such as temporary weakness of an arm or leg. People who have larger strokes may be permanently paralyzed on one side of their body or lose their ability to speak. Some people recover completely from strokes, but more than 2/3 of survivors will have some type of disability.

Stroke by the Numbers

  • Each year nearly 800,000 people experience a new or recurrent stroke.
  • A stroke happens every 40 seconds.
  • Stroke is the fifth leading cause of death in the U.S.
  • Every 4 minutes someone dies from stroke.
  • Up to 80 percent of strokes can be prevented.
  • Stroke is the leading cause of adult disability in the U.S.

Complex Regional Pain Syndrome (CRPS)

Signs and symptoms of complex regional pain syndrome include:

  • Continuous burning or throbbing pain, usually in your arm, leg, hand or foot
  • Sensitivity to touch or cold
  • Swelling of the painful area
  • Changes in skin temperature — at times your skin may be sweaty; at other times it may be cold
  • Changes in skin color, which can range from white and mottled to red or blue
  • Changes in skin texture, which may become tender, thin or shiny in the affected area
  • Changes in hair and nail growth
  • Joint stiffness, swelling and damage
  • Muscle spasms, weakness and loss (atrophy)
  • Decreased ability to move the affected body part

Symptoms may change over time and vary from person to person. Most commonly, pain, swelling, redness, noticeable changes in temperature and hypersensitivity (particularly to cold and touch) occur first.

Over time, the affected limb can become cold and pale and undergo skin and nail changes as well as muscle spasms and tightening. Once these changes occur, the condition is often irreversible.

Complex regional pain syndrome occasionally may spread from its source to elsewhere in your body, such as the opposite limb. The pain may be worsened by emotional stress.

In some people, signs and symptoms of complex regional pain syndrome go away on their own. In others, signs and symptoms may persist for months to years. Treatment is likely to be most effective when started early in the course of the illness.

Mental Health Awareness Month: Know the Warning Signs

Mental Health Awareness Month - Know the Warning Signs

Trying to tell the difference between what expected behaviors are and what might be the signs of a mental illness isn’t always easy. There’s no easy test that can let someone know if there is mental illness or if actions and thoughts might be typical behaviors of a person or the result of a physical illness.

Each illness has its own set of symptoms but some common signs of mental illness in adults and adolescents can include the following.

  • Excessive worrying or fear
  • Feeling excessively sad or low
  • Confused thinking or problems concentrating and learning
  • Extreme mood changes, including uncontrollable “highs” or feelings of euphoria
  • Prolonged or strong feelings of irritability or anger
  • Avoiding friends and social activities
  • Difficulties understanding or relating to other people
  • Changes in sleeping habits or feeling tired and low energy
  • Changes in eating habits such as increased hunger or lack of appetite
  • Changes in sex drive
  • Difficulty perceiving reality (delusions or hallucinations, in which a person experiences and senses things that don’t exist in objective reality)
  • Inability to perceive changes in one’s own feelings, behavior or personality (”lack of insight” or anosognosia)
  • Abuse of substances like alcohol or drugs
  • Multiple physical ailments without obvious causes (such as headaches, stomach aches, vague and ongoing “aches and pains”)
  • Thinking about suicide
  • Inability to carry out daily activities or handle daily problems and stress
  • An intense fear of weight gain or concern with appearance (mostly in adolescents)

Mental health conditions can also begin to develop in young children. Because they’re still learning how to identify and talk about thoughts and emotions, their most obvious symptoms are behavioral. Symptoms in children may include:

  • Changes in school performance
  • Excessive worry or anxiety, for instance fighting to avoid bed or school
  • Hyperactive behavior
  • Frequent nightmares
  • Frequent disobedience or aggression
  • Frequent temper tantrums

Autism Spectrum Disorders

Autism spectrum disorders (ASDs) are a group of developmental disabilities that can cause significant social, communication and behavioral challenges.

ASDs are “spectrum disorders” which means ASDs affect each person in different ways, and can range from very mild to severe. People with ASDs share some similar symptoms, such as problems with social interaction. But there are differences in when the symptoms start, how severe they are, and the exact nature of the symptoms.


Types of ASDs
There are three different types of ASDs:

  • Autistic Disorder (also called “classic” autism)
    This is what most people think of when hearing the word “autism.” People with autistic disorder usually have significant language delays, social and communication challenges, and unusual behaviors and interests. Many people with autistic disorder also have intellectual disability.
  • Asperger Syndrome
    People with Asperger syndrome usually have some milder symptoms of autistic disorder. They might have social challenges and unusual behaviors and interests. However, they typically do not have problems with language or intellectual disability.
  • Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS; also called “atypical autism”)
    People who meet some of the criteria for autistic disorder or Asperger syndrome, but not all, may be diagnosed with PDD-NOS. People with PDD-NOS usually have fewer and milder symptoms than those with autistic disorder. The symptoms might cause only social and communication challenges.


Signs and Symptoms
ASDs begin before the age of 3 and last throughout a person’s life, although symptoms may improve over time. Some children with an ASD show hints of future problems within the first few months of life. In others, symptoms might not show up until 24 months or later. Some children with an ASD seem to develop normally until around 18 to 24 months of age and then they stop gaining new skills, or they lose the skills they once had.

A person with an ASD might:

  • Not respond to their name by 12 months
  • Not point at objects to show interest (point at an airplane flying over) by 14 months
  • Not play “pretend” games (pretend to “feed” a doll) by 18 months
  • Avoid eye contact and want to be alone
  • Have trouble understanding other people’s feelings or talking about their own feelings
  • Have delayed speech and language skills
  • Repeat words or phrases over and over (echolalia)
  • Give unrelated answers to questions
  • Get upset by minor changes
  • Have obsessive interests
  • Flap their hands, rock their body, or spin in circles
  • Have unusual reactions to the way things sound, smell, taste, look, or feel


Diagnosis
Diagnosing ASDs can be difficult since there is no medical test, like a blood test, to diagnose the disorders. Doctors look at the child’s behavior and development to make a diagnosis.

ASDs can sometimes be detected at 18 months or younger. By age 2, a diagnosis by an experienced professional can be considered very reliable. However, many children do not receive a final diagnosis until much older. This delay means that children with an ASD might not get the help they need.


Treatment
There is currently no cure for ASDs. However, research shows that early intervention treatment services can greatly improve a child’s development. Early intervention services help children from birth to 3 years old (36 months) learn important skills. Services can include therapy to help the child talk, walk, and interact with others. Therefore, it is important to talk to your child’s doctor as soon as possible if you think your child has an ASD or other developmental problem.

Even if your child has not been diagnosed with an ASD, he or she may be eligible for early intervention treatment services. The Individuals with Disabilities Education Act (IDEA) says that children under the age of 3 years (36 months) who are at risk of having developmental delays may be eligible for services. These services are provided through an early intervention system in your state. Through this system, you can ask for an evaluation.

In addition, treatment for particular symptoms, such as speech therapy for language delays, often does not need to wait for a formal ASD diagnosis.

Learn about types of treatments »


Causes and Risk Factors
We do not know all of the causes of ASDs. However, we have learned that there are likely many causes for multiple types of ASDs. There may be many different factors that make a child more likely to have an ASD, including environmental, biologic and genetic factors.

  • Most scientists agree that genes are one of the risk factors that can make a person more likely to develop an ASD.
  • Children who have a sibling or parent with an ASD are at a higher risk of also having an ASD.
  • ASDs tend to occur more often in people who have certain other medical conditions. About 10% of children with an ASD have an identifiable genetic disorder, such as Fragile X syndrome, tuberous sclerosis, Down syndrome and other chromosomal disorders.
  • Some harmful drugs taken during pregnancy have been linked with a higher risk of ASDs, for example, the prescription drugs thalidomide and valproic acid.
  • We know that the once common belief that poor parenting practices cause ASDs is not true.
  • There is some evidence that the critical period for developing ASDs occurs before birth. However, concerns about vaccines and infections have led researchers to consider risk factors before and after birth.

ASDs are an urgent public health concern. Just like the many families affected in some way by ASDs, CDC wants to find out what causes the disorder. Understanding the risk factors that make a person more likely to develop an ASD will help us learn more about the causes. We are currently working on one of the largest U.S. studies to date, called Study to Explore Early Development (SEED). SEED is looking at many possible risk factors for ASDs, including genetic, environmental, pregnancy, and behavioral factors.


Who is Affected
ASDs occur in all racial, ethnic, and socioeconomic groups, but are almost five times more common among boys than among girls. CDC estimates that about 1 in 88 children has been identified with an autism spectrum disorder (ASD).

More people than ever before are being diagnosed with an ASD. It is unclear exactly how much of this increase is due to a broader definition of ASDs and better efforts in diagnosis. However, a true increase in the number of people with an ASD cannot be ruled out. We believe the increase in ASD diagnosis is likely due to a combination of these factors.

Within the past decade, CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network has been estimating the number of people with an ASD in the U.S. We have learned a lot about how many children in the U.S. have an ASD. It will be important to use the same methods to track how the number of people with an ASD is changing over time in order to learn more about the disorders.


If You’re Concerned
If you think your child might have an ASD or you think there could be a problem with the way your child plays, learns, speaks, or acts,contact your child’s doctor, and share your concerns.

If you or the doctor is still concerned, ask the doctor for a referral to a specialist who can do a more in-depth evaluation of your child. Specialists who can do a more in-depth evaluation and make a diagnosis include:

  • Developmental Pediatricians (doctors who have special training in child development and children with special needs)
  • Child Neurologists (doctors who work on the brain, spine, and nerves)
  • Child Psychologists or Psychiatrists (doctors who know about the human mind)

At the same time, call your state’s public early childhood system to request a free evaluation to find out if your child qualifies for intervention services. This is sometimes called a Child Find evaluation. You do not need to wait for a doctor’s referral or a medical diagnosis to make this call.

Where to call for a free evaluation from the state depends on your child’s age:

  • If your child is not yet 3 years old, contact your local early intervention system.You can find the right contact information for your state by calling the National Dissemination Center for Children with Disabilities (NICHCY) at 1-800-695-0285.Or visit the NICHCY website. Once you find your state on this webpage, look for the heading “Programs for Infants and Toddlers with Disabilities: Ages Birth through 3″.
  • If your child is 3 years old or older, contact your local public school system.Even if your child is not yet old enough for kindergarten or enrolled in a public school, call your local elementary school or board of education and ask to speak with someone who can help you have your child evaluated.If you’re not sure who to contact, call the National Dissemination Center for Children with Disabilities at 1.800.695.0285 or visit the NICHCY website. Once you find your state on this webpage, look for the heading “Programs for Children with Disabilities: Ages 3 through 5″.

Research shows that early intervention services can greatly improve a child’s development. In order to make sure your child reaches his or her full potential, it is very important to get help for an ASD as soon as possible.

Leigh Syndrome

What is Leigh syndrome?
Leigh syndrome is a severe neurological disorder that typically arises in the first year of life. This condition is characterized by progressive loss of mental and movement abilities (psychomotor regression) and typically results in death within a couple of years, usually due to respiratory failure. A small number of individuals develop symptoms in adulthood or have symptoms that worsen more slowly.

The first signs of Leigh syndrome seen in infancy are usually vomiting, diarrhea, and difficulty swallowing (dysphagia) that leads to eating problems. These problems often result in an inability to grow and gain weight at the expected rate (failure to thrive). Severe muscle and movement problems are common in Leigh syndrome. Affected individuals may develop weak muscle tone (hypotonia), involuntary muscle contractions (dystonia), and problems with movement and balance (ataxia). Loss of sensation and weakness in the limbs (peripheral neuropathy), common in people with Leigh syndrome, may also make movement difficult.

Several other symptoms may occur in people with Leigh syndrome. Many affected individuals develop weakness or paralysis of the muscles that move the eyes (ophthalmoparesis); rapid, involuntary eye movements (nystagmus); or degeneration of the nerves that carry information from the eyes to the brain (optic atrophy). Severe breathing problems are common in people with Leigh syndrome, and these problems can worsen until they cause acute respiratory failure. Some affected individuals develop hypertrophic cardiomyopathy, which is a thickening of the heart muscle that forces the heart to work harder to pump blood. In addition, a substance called lactate can build up in the body, and excessive amounts are often found in the blood, cerebrospinal fluid, or urine of people with Leigh syndrome.

The signs and symptoms of Leigh syndrome are caused in part by patches of damaged tissue (lesions) that develop in the brains of people with this condition. A procedure called magnetic resonance imaging (MRI) reveals characteristic lesions in certain regions of the brain and the brainstem (the part of the brain that is connected to the spinal cord). These regions include the basal ganglia, which help control movement; the cerebellum, which controls the ability to balance and coordinates movement; and the brainstem, which controls functions such as swallowing, breathing, hearing, and seeing. The brain lesions are often accompanied by loss of the myelin coating around nerves (demyelination), which reduces the ability of the nerves to activate muscles used for movement or relay sensory information back to the brain.

How common is Leigh syndrome?
Leigh syndrome affects at least 1 in 40,000 newborns. The condition is more common in certain populations. For example, the condition occurs in approximately 1 in 2,000 newborns in the Saguenay Lac-Saint-Jean region of Quebec, Canada.

Local Heroes Contest! Enter To Win a Free Accessible Vehicle!

This is the 4th annual National Mobility Awareness Month. During this month NMEDA has an amazing promotion where they encourage people with disAbilities to embody the spirit of Life Moving Forward by raising awareness of the many life-changing mobility vehicle solutions available today.

NMEDA and their members are mobility advocates dedicated to changing the lives of those living with disAbilities by providing access to quality handicap accessible vehicles and adaptive equipment. Whether you are living with a disAbility or have dedicated your time to helping someone who is, they want to hear your story of perseverance and strength.

For your chance to win a FREE wheelchair accessible vehicle enter NMEDA’s contest by telling them what makes you (or your loved one) a Local Hero! You can enter here

This year they will be giving away 4 handicap accessible vehicles:

  • one to a caregiver
  • one to a senior (60+)
  • one that is battery powered (for in-town driving only)
  • one in the general category.

Over 18 million people in North America are living with restrictive mobility issues. This is your chance to change the lives of just a few of those triumphing in the face of adversity.

Hiring Our Heroes Job Fair: One Month Away

Hiring Our Heroes Job Fair

Join them for a hiring expo for service members, veterans, and military spouses at Fenway Park in Boston.

Fenway Park

20 Yawkey Way

Boston, MA 02215

 

Event Schedule:
9:30 a.m. – 11:30 a.m. Employment Workshop
12:00 p.m. – 3:00 p.m. Hiring Expo

Registration
Job Seekers, Employers, and Service Organizations: Click here to register.
Why register? Job seekers can upload their resumes to be viewed by employers ahead of the event.

If you have any other questions, please visit their FAQ page.

This Boston Red Sox and GE sponsored hiring event is being conducted by the U.S. Chamber of Commerce Foundation, the Department of Labor Veterans’ Employment and Training Service (DOL VETS), the Massachusetts Committee of the Employer Support of the Guard and Reserve (ESGR), the U.S. Department of Veterans Affairs, Goodwill Industries International, The American Legion, NBC News, and other local partners.

Purple Up For Military Kids!

Purple Up For Military Kids!

April is Month of the Military Child, a time to recognize the sacrifices made by military families and their children. On April 15 you can wear purple to show your support for our military families.

Wearing the color purple is a visible way to show support and thank military youth for their strength and sacrifices. Why purple? Purple is the color that symbolizes all branches of the military, as it is a combination of Army green, Marine red, and Coast Guard, Air Force, and Navy blue.

The 2015 Local Heroes Contest Begins Next Week

NEMEDA Local Hero Contest – Enter or Vote Today!

May Is National Mobility Awareness Month

Join the National Mobility Equipment Dealers Association (NMEDA) in celebrating the 4th annual National Mobility Awareness Month. During this amazing promotion, they encourage people with disAbilities to embody the spirit of Life Moving Forward by raising awareness of the many life-changing mobility vehicle solutions available today.

NMEDA and their members are mobility advocates dedicated to changing the lives of those living with disAbilities by providing access to quality handicap accessible vehicles and adaptive equipment. Whether you are living with a disAbility or have dedicated your time to helping someone who is, they want to hear your story of perseverance and strength. Once the promotion begins, tell them what makes you, or your loved one, a Local Hero for a chance to win a Wheelchair Accessible Vehicle.

This year they will be giving away 4 handicap accessible vehicles:

  • one to a caregiver
  • one to a senior (60+)
  • one that is battery powered (for in-town driving only)
  • one in the general category.

Find out more about NMEDA and the work they do within the disAbled community and stay tuned for this year’s events!

You can summit your stories on April 15, 2015.
Voting for your favorite Local Hero story will begin on May 1 and end on May 31.

Over 18 million people in North America are living with restrictive mobility issues. This is your chance to change the lives of just a few of those triumphing in the face of adversity.

April Is National Sarcoidosis Awareness Month

The following information and more can be found on The Foundation For Sarcoidosis Research’s website: www.stopsarcoidosis.org

April Is National Sarcoidosis Awareness Month

Sarcoidosis is an inflammatory disease that can affect almost any organ in the body. It causes heightened immunity, which means that a person’s immune system, which normally protects the body from infection and disease, overreacts, resulting in damage to the body’s own tissues. The classic feature of sarcoidosis is the formation of granulomas, microscopic clumps of inflammatory cells that group together (and look like granules, hence the name). When too many of these clumps form in an organ they can interfere with how that organ functions.

Sarcoidosis is a multi-system disorder.  Symptoms typically depend on which organ the disease affects.  Most often the disease will affect the lungs.

  • General: About one third of patients will experience non-specific symptoms of fever, fatigue, weight loss, night sweats and an overall feeling of malaise (or ill health).
  • Lungs: The lungs are affected in more than 90% of patients with sarcoidosis.  A cough that does not go away, shortness of breath, particularly with exertion and chest pain occur most frequently with the pulmonary form of the disease.
  • Lymph Nodes: Up to 90% of sarcoidosis patients have enlarged lymph nodes. Most often they are in the neck, but those under the chin, in the armpits and in the groin can be affected.  The spleen, which is part of the lymphatic system, can also be affected.
  • Liver: Although between 50% to 80% of patients with sarcoidosis will have granulomas in their liver, most are without symptoms and do not require treatment.
  • Heart: Researchers estimate that cardiac sarcoidosis, affects more than 10 percent of people with sarcoidosis in the United States, and perhaps as mHeart: any as 25 percent.  Sarcoidosis can cause the heart to beat weakly resulting in shortness of breath and swelling in the legs.  It can also cause palpitations (irregular heartbeat).
  • Brain & Nervous System: From 5% to 13% of patients have neurologic disease.  Symptoms can include headaches, visual problems, weakness or numbness of an arm or leg and facial palsy.
  • Skin:  One in four (25%) of patients will have skin involvement.  Painful or red, raised bumps on the legs or arms (called erythema nodosum), discoloration of the nose, cheeks, lips and ears (called lupus pernio) or small brownish and painless skin patches are symptoms of the cutaneous form of the disease.
  • Bones, Joints & Muscles:  Joint pain occurs in about one-third of patients.  Other symptoms include a mass in the muscle, muscle weakness and arthritis in the joints of the ankles, knees, elbows, wrists, hands and feet.
  • Eyes:  Any part of the eye can be affected by sarcoidosis and about 25% of patients have ocular involvement.  Common symptoms include: burning, itching, tearing, pain, red eye, sensitivity to light (photophobia), dryness, seeing black spots (called floaters) and blurred vision.  Chronic uveitis (inflammation of the membranes or uvea of the eye) can lead to glaucoma, cataracts and blindness.
  • Sinuses, Nasal Muscosa (lining) & Larynx:  About 5% of patients will have involvement in the sinuses with symptoms that can include sinusitis, hoarseness or shortness of breath.
  • Other Organs:  Rarely, the gastrointestinal tract, reproductive organs, salivary glands and the kidneys are affected.

 

April is the Month of the Military Child

April is the Month of the Military Child

In 1986 the Department of Defense deemed April as the Month of the Military Child. From deployments to frequent moves, military children face unique challenges that most youth their age do not experience. This annual awareness campaign recognizes the sacrifices made and applauds the courage of military children.

  • Military families relocate 10 times more often the civilian families; on average, every two or three years
  • Since 2001, more than 2 million American children have had a parent deployed at least once.
  • More than 900,000 children have experienced the deployment of one or both parents multiple times.
  • Children in military families experience high rates of mental health, trauma, and related problems. About 30% reported feeling sad or hopeless almost everyday for 2 weeks during the past 12 months. Nearly 1 in 4 reported having considered suicide.
  • 37% of children with a deployed parent reported that they seriously worry about what could happen to their deployed caretaker.

Autism Awareness Month

Autism Awareness Month

The importance of recognizing Autism throughout the month of April is to help better educate and raise awareness to the public. Autism is a complex mental condition and developmental disability, characterized by difficulties in the way a person communicates and interacts with other people. Autism can be present from birth or form during early childhood, typically within the first three years. Autism is a lifelong developmental disability with no single known cause.

People with autism are also known as having Autism Spectrum Disorder (ASD) both terms are often used interchangeably. People with ASD have a set of symptoms unique to themselves; no two people are the same. ASD affects people in different ways, and can range from very mild to severe. Although some symptoms are similar, such as challenges with social interaction, there are differences in when the symptoms start, how severe they are, and the exact nature of the symptoms.

If you are looking for a way to get involved, donate for just want to learn more information about Autism you can visit the websites of some great organizations such as Autism Speaks, Autism Society and the National Autism Association.

World Autism Awareness Day: Light It Up Blue

Light It Up Blue - World Autosm Awareness Day

Every April 2, Autism Speaks celebrates World Autism Awareness Day with a global autism awareness campaign called Light It Up Blue. It’s easy (and fun!) to be a part of it — you can do anything from wearing blue to lighting your whole office or school up blue.

Add your name to say you’ll be a part of it, and we’ll be in touch with resources and ideas to get your friends involved. Thanks for helping shine a light on autism.

World Autism Awareness Day - Light It Up Blue

What Is Autism?
Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. With the May 2013 publication of the DSM-5 diagnostic manual, all autism disorders were merged into one umbrella diagnosis of ASD. Previously, they were recognized as distinct subtypes, including autistic disorder, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger syndrome.

ASD can be associated with intellectual disability, difficulties in motor coordination and attention and physical health issues such as sleep and gastrointestinal disturbances. Some persons with ASD excel in visual skills, music, math and art.

Autism appears to have its roots in very early brain development. However, the most obvious signs of autism and symptoms of autism tend to emerge between 2 and 3 years of age. Autism Speaks continues to fund research on effective methods for earlier diagnosis, as early intervention with proven behavioral therapies can improve outcomes. Increasing autism awareness is a key aspect of this work and one in which our families and volunteers play an invaluable role.

Parkinson’s Awareness

Parkinson's Awareness

Parkinson’s disease is a movement disorder that is chronic and progressive, meaning that symptoms continue and worsen over time.

As many as one million individuals in the US live with Parkinson’s disease. While approximately four percent of people with Parkinson’s are diagnosed before the age of 50, incidence increases with age.

Its major symptoms vary from person to person, but can include tremor, slowness of movements, limb stiffness, and difficulties with gait and balance. The cause of the disease is unknown, and although there is presently no cure, there are treatment options such as medication and surgery to manage the symptoms.

Spring Rust Treatment

Owning any type of vehicle means that you have to commit to regular service and maintenance to keep it in good condition. Owning a wheelchair van and adaptive equipment is no different – you still need regular service to keep everything operating the way it should. However, it comes with some additional caveats – you can’t just go to any service center and ensure that you’re maintaining your wheelchair van or mobility equipment correctly.

Here at our Mobility Center, not only do we understand the importance of maintaining your mobility vehicle and adaptive equipment, but we take the needed steps to ensure that everything is always in top condition. No other mobility dealer offers the level of maintenance offered by us.

Rust Maintenance
Vehicles today are subject to rust and corrosion due to moisture, humidity, tons of road salt and other airborne pollutants that can cause rapid deterioration of your wheelchair van. If neglected, the damages can make your mobility investment of little value.  The thousands of yearly miles, environments and exposure to the elements of larger vehicles means they are a lot more likely to suffer from the effects of corrosion. Correct rust proofing on a regular basis can ensure that your vehicle does not suffer from corrosion related vehicle downtime and keep your van from falling apart.

** We highly recommend that everyone gets their wheelchair accessible vehicles rust proofed at least twice a year. Once in Spring and again in the Fall. **

If you consider that new vehicles undergo thousands of spot welds and numerous bends and folds during assembly; this process damages the automobile coating systems, exposing these panels to corrosion. Besides body-panel damage, certain mechanical parts are also at risk – suspension mounts, hood-locking mechanisms, door hinges, brake cables – which are all susceptible to the damaging effects of rust on your wheelchair van.

To protect your vehicle against corrosion our rust proofing formula does more than just cover the metal required. A rust proofing product must be applied as a high-pressured spray, ensuring protection to your vehicle’s most critical areas by penetrating, displacing existing moisture and protecting the many vulnerable crevices of your automobile.

Benefits of rust treatment
Prevention is better than a cure. There are a number of products that can offer prevention against rust. Products are available either as oils, waxes, fluids and coatings.  The range is vast. Our rust prevention processes, products, plan and application have been found to be very effective and developed over more than 25 years and still remain affordable.

We are the only mobility dealer in New England to offer this service.

Our rust proofing processes is ever evolving and has been for more than 25 years.

Adaptive Golf

Whether you want to learn the game or hone your skills, there is a golf program for everyone! Many solutions exist for whatever stops you from enjoying the game of golf, from carts to clubs to accessories and specialty devices.

  • Adaptive golf carts now have swivel and extending seats and armrests to play while seated as well as elevating lifts that allow paraplegics and others with limited leg strength to play from a standing position.
  • Adaptive golf clubs can have special grips for those with missing fingers, deformed hands, osteoarthritis or loss of strength. Some are specialized for seated or standing golfers. Some club shafts are bent for seated individuals.
  • Gloves and grip aids include prosthetic golf grip devices, elastic gripping devices and more.
  • Accessories include tee setters and ball retrieval systems to reduce bending. One device even stabilizes your balance.

Search for a golf program for those with disabilities in your area to get tailored instruction from golf instructors certified to teach. For more information, check out national associations like the National Alliance for Accessible Golf, the Disabled Sports USA, and/or the United States Golf Assoc.

The Adaptive Golf Foundation of America has scrambles, classics, opens, championships and tournaments across the country throughout the year.

Fire Fighters Memorial Motorcycle Run & Benefit Party

Fire Fighters Memorial Motorcycle Run & Benefit Party

Tips to Help Overcome the Fear of Driving

Practice practice practice:

  • To boost your confidence, drive to the end of the block and back or around an empty parking lot, then gradually go for longer drives.
  • Ask someone to accompany you if that helps you relax.

Patience:

  • Don’t start driving if you’re not calm and collected. Sit in the car and take deep breaths until you attain peace of mind and only then start the car and drive away.
  • Yoga classes may help you become a more focused, calm and less distracted driver.
  • If you get lost or experience panic, pull over until you calm down. Take as much time as you need. If you have a cell phone, call for directions.

Never get lost!

  • A Global Positioning System (GPS) may lessen the fear of getting lost.
  • No GPS? Print out the map directions from the Internet for those places you go frequently and keep them in the glove box.

Therapy:

Simple solutions to physical problems may help the mental and emotional pangs. For example, a spinner knob on the steering wheel allows accurate one-handed steering; hand controls replace feet for acceleration or braking—whatever the problem, there are solutions.

Occupational Therapists and Driver Rehabilitation Specialists can help. You can get a behind-the-wheel evaluation and recommendations for adaptive driving aids to help overcome many physical drawbacks. Whether the problem is muscle weakness, spasms or something else, therapists can address them.

Tuberculosis (TB) Awareness

Tuberculosis (TB) may seem like an obscure disease; perhaps you were once tested for it during a pre-employment or school physical. But for people in some countries, tuberculosis infection is a real threat, the symptoms are well known, and the death toll is still too high. With the emergence of resistant strains of TB, currently used medications are becoming less effective, and for some strains, treatment is extremely difficult.

And TB is more common than you may think. About one-third of the world’s population is currently infected with TB, with one new infection occurring every second. Not all infected people are sick with active TB; in fact, 90 percent have “walled off” the bacteria within their lungs and are not ill. But the other 10 percent will develop active, contagious tuberculosis each year, and each person who develops active TB will likely infect at least 10 to 15 other people before s/he is treated.

Tuberculosis Is All About Human Contact
Eradicating the tuberculosis infection in a particular country isn’t a matter of simply providing a clean water supply or non-contaminated food — it’s about setting up an organized system for recognizing the infection, treating it, and reducing transmission from person to person. Tuberculosis is spread by the tiny droplets that become airborne when a person with active TB coughs.

Preventing Tuberculosis Infection
Limiting transmission sounds simple in principle, but it is an elusive goal for many countries. To stop the spread of tuberculosis, people must be treated as soon as they contract it.

The United States has an extremely low incidence of tuberculosis — around 12,000 to 13,000 new diagnoses per year. That’s because the United States has the human resources, an existing healthcare system, and funds needed for controlling the disease. Many countries have none of these things. And those countries, including many in Asia and Africa, are still plagued with high numbers of tuberculosis cases. Effective medications are needed to control tuberculosis and unfortunately some parts of the world either can’t afford or can’t administer them.

Project 22

Project 22

The cost will be $12.50 for civilians and FREE for Veterans.
VETERANS STILL MUST CLICK ON THE LINK AND RESERVE THEIR TICKETS!

Tickets will go fast and this will be a one night only show so make sure you get yours today! Just go to www.clickitevents.com to purchase yours!

For those riding, there will be a link up at Harley-Davidson of Frederick and then will have an after party at Hardtimes Cafe And Cue.

Saturday, May 2
at 7:00pm
MDL Holiday Cinemas official
100 Baughmans Ln, Frederick, Maryland 21702

For more information on this event please visit the Website or Facebook Page
Click here to view the trailers!
If you can’t make it to the event but still want to support the cause you can Donate Here!

ALL PROCEEDS WILL BENEFIT 22 NEEDS A FACE

The making of Project 22
Project 22 was a 22 day, 6,500 mile motorcycle awareness campaign from San Francisco to New York City to raise awareness of the high rate of suicides within the Veteran community. As we traveled across the country, we spoke with many Veterans who had contemplated or attempted suicide and asked them for their stories; what led them to it and what brought them out of it. The responses regarding the challenges were in remarkable unison although the hope they found came in many different forms. We were able to explore the therapeutic potential behind sailing, pottery, education, activism, family, service dogs, painting and more.

We also spoke with leading researchers of Traumatic Brain Injury and Post Traumatic Stress, mental health clinicians and educators, as well as, leading experts in warrior culture and combat stress. Coupled with the insightful and potentially life changing information we captured in interviews, we filmed the motorcycle awareness campaign, including camping, several organized rides and our final ride being escorted into World Trade Center by the Port Authority Police Department. We gathered incredible footage and news coverage in multiple cities, including Pittsburgh and New York.

Project 22 was entirely crowd-funded via an IndieGoGo campaign and private donations. In addition, the crew was offered food, lodging and assistance wherever we rode, helping keep production costs low. Project 22 is fiscally sponsored by From The Heart Productions, a 501(c)3 non-profit organization, while Medicinal Missions applies for independent non-profit status. All donations are tax-deductible and are made payable to From The Heart Productions via the PayPal link on our website or by check to: From The Heart Productions 1455 Mandalay Beach Road Oxnard, CA 93035-2845

From The Heart has been successfully funding films since inception in 1993 under the 501(c)3 Internal Revenue Code of 1954. Also classified as a public charity under section 509 (a) (2) of the Code. Monetary donations to the Fiscal Sponsorship Program qualify as charitable contributions under the U.S. Tax Code for 95 444 5418.

Current Campaign
Statistically, 22 Veterans of the US Military will take their own lives and 22 families will lose loved ones today due to combat-related stresses and injuries. Project 22 follows two combat-wounded Veterans on a mission to find hope. Riding motorcycles from San Francisco to New York, Daniel and Doc speak with Veterans about post-war challenges that lead to suicide and the healing Veterans are finding in alternative forms of therapy such as sailing, pottery, education, service dogs and more.

During the 6,500 mile journey, our riders interview leading researchers, mental health clinicians and educators who specialize in Traumatic Brain Injury and Post Traumatic Stress, as well as a leading expert in Warrior Culture and Combat Stress. Asking hard hitting questions and opening up about their own struggles, Daniel and Doc will stop at nothing to reach tomorrow’s twenty-two.

Mission Statement
To raise awareness of Veteran suicides and to educate on methods to overcome symptoms of Post Traumatic Stress (PTS) and Traumatic Brain Injury (TBI) in order to prevent Veteran suicides and make alternative therapies available to Veterans with PTS and TBI.

Universal design

Universal design

Universal Design makes things safer, easier and more convenient for everyone.
Universal Design involves designing products and spaces so that they can be used by the widest range of people possible. Universal Design evolved from Accessible Design, a design process that addresses the needs of people with disabilities. Universal Design goes further by recognizing that there is a wide spectrum of human abilities. Everyone, even the most able-bodied person, passes through childhood, periods of temporary illness, injury and old age. By designing for this human diversity, we can create things that will be easier for all people to use.

Who Does Universal Design Benefit?
Everyone.
Universal Design takes into account the full range of human diversity, including physical, perceptual and cognitive abilities, as well as different body sizes and shapes. By designing for this diversity, we can create things that are more functional and more user-friendly for everyone. For instance, curb cuts at sidewalks were initially designed for people who use wheelchairs, but they are now also used by pedestrians with strollers or rolling luggage. Curb cuts have added functionality to sidewalks that we can all benefit from.

What can be Universally Designed?
Everything.

  • Universal Design can apply to anything that can be designed, including products like door handles, kitchen utensils and smartphones.
  • Universal Design can be applied to architecture and the built environment, including public and commercial buildings, as well as residential buildings and family homes.
  • Universal Design can also be applied to the community at large through urban planning and public transportation.

Universal Design vs. the Americans with Disabilities Act
The Americans with Disabilities Act (ADA) is a piece of legislation that protects the civil rights of people with disabilities by ensuring that they are not unfairly denied access to job opportunities, goods or services due to their disability. The ADA includes the 2010 ADA Standards for Accessible Design, which outlines accessibility requirements for buildings and facilities. There is a great deal of overlap between what is required under the ADA and what would be suggested by Universal Design, but there are also differences. The ADA outlines the bare minimum necessary in order to curb discrimination against people with disabilities, while Universal Design strives to meet the best practices for design, which are always evolving and improving as we continue to learn more about how to best meet people’s different needs. The ADA focuses solely on the civil rights of people with disabilities, while Universal Design is designed with everyone in mind. The ADA does not apply to single family residences, while Universal Design can and should.

Below are some examples of universal designs:

Low Force Flooring Materials
There is actually a reason that short, stiff carpets and hard surface floors are found in most public buildings. If you use a wheelchair, you know how difficult it can be to push through even slightly plush carpet. Wheelchairs, handcarts, strollers – they are all easier to operate on hard surfaces.

Seamless Room Transitions
Room thresholds are most common in transitions between areas of carpeting and hard surfaces, and those lips can be not only difficult, but painful to maneuver over. Sticking to a consistent flooring style and removing those thresholds can make a huge impact on ease of maneuvering an interior.

Access for Pools
An hour of freely moving around in the water gives people with severe arthritis, muscle atrophy, and more a way to recover and live a significantly more pain-free life. This is why an increasing number of public pools have accessible chairs on metal arms by the side of the pool.

Lever Handles Instead of Knobs
Knobs, while being visually more appealing, require quite a bit more arm and wrist torque to move the bolt. Lever handles require both less force and overall motion.

Close Captioning/Large Print
Tablets, eReaders, smartphones, and more have shortcuts to increase font size easily – another great example of subtle universal design. This is the same principle behind why Netflix, YouTube and others alike now have captioning built in. Disability or not, these features can make life easier.

 

Fundraiser for the Morgan Fund

When?
Saturday March 28, 2015
At 7:00pm

Where?
East Bridgewater Commercial Club
East Bridgewater, MA 02333

Why?
To Help raise awareness about Fibrodysplasia Ossificans Progressiva (FOP)
All Proceeds will benefit the Morgan Fund in Honor of Morgan Lawler.

More Information
This event is for adults.
Tickets are $20.00 per person.
There will be raffle items available.

Donations can be made out to:
The Morgan Fund
P.O. Box 96
East Bridgewater, Ma 02333

Website
Please feel free to invite your friends.
Facebook Page

Hydrocephalus

Hydrocephalus comes from the Greek words ‘hydro’ meaning water and ‘cephalus’ meaning head.

Hydrocephalus is an abnormal accumulation of cerebrospinal fluid (CSF) within cavities in the brain called ventricles. Cerebrospinal fluid is produced in the ventricles and in the choroid plexus. It circulates through the ventricular system in the brain and is absorbed into the bloodstream. This fluid is in constant circulation and has many functions, including to surround the brain and spinal cord and act as a protective cushion against injury. It contains nutrients and proteins necessary for the nourishment and normal function of the brain, and carries waste products away from surrounding tissues.

Hydrocephalus occurs when there is an imbalance between the amount of CSF that is produced and the rate at which it is absorbed. As the CSF builds up, it causes the ventricles to enlarge and the pressure inside the head to increase.

Who develops hydrocephalus?
Hydrocephalus affects a wide range of people, from infants and older children to young, middle-aged and older adults.

  • Over 1,000,000 people in the United States currently live with hydrocephalus.
  • For every 1,000 babies born in this country, one to two will have hydrocephalus.
  • Hydrocephalus is the most common reason for brain surgery in children.
  • It is estimated that more than 700,000 Americans have NPH, but less than 20% receive an appropriate diagnosis.

Visit the Hydrocephalus Association’s website for more information.

Great Career Options For Those With DisAbilities

In today’s highly-competitive workforce, finding a quality job can be a challenge. For individuals with disAbilities, the competition is even more extreme, but there are some positive changes on the horizon. Career opportunities are greater than they have ever been for individuals with disAbilities. This is largely credited to the ADA, which helps accommodate people with disAbilities and works to prevent discrimination within the workforce.

Here are a few great options for those with disAbilities to claim a spot on the workforce.

  • Working From Home
    From jobs as writers, salespersons or teachers through online courses, people with disAbilities have a wide variety of options available when it comes to working from home. There are also excellent opportunities for teaching gigs outside the home, as most schools are very wheelchair-friendly.
  • Working in Finance
    Accounting and financial jobs are viable career paths for those that need mobility help as office buildings have become more and more accessible throughout the years. Ernest & Young was listed as number one on Diversity Inc.’s “Top 10 Companies for People With DisAbilities” list. Also on the list was the Hardfort Financial Services Group.
  • Working with Computers
    Another great option for a career is one involving computers. This Internet and electronic age is booming. With more demand for people that are technologically savvy comes more prospects for job seekers. IBM is not only another one of the top employers for candidates with disAbilities but also a leader in computer technology. Computer systems analysts and software developers usually require a bachelor’s degree in computer sciences or a similar field, but technical vocation jobs are available for those without related degrees and require less schooling.
  • Legal Careers
    The legal world is another field that is accommodating for mobility assistance. Being a lawyer for those who share your disAbilities may even be your niche.  There are many other options for a legal career such as being a legal secretary, paralegal or legal assistant, all of which require certification but do not necessarily require a degree.
  • Government Jobs
    Lastly, the government is a great employer for people with disAbilities. Since the 1980s, federal employment has remained at 7 percent.

Where to Find your Career
The easiest place to start looking today is on online job boards. While there are many job boards to choose from, GettingHired.com accommodates people with disabilities by providing special search filters.

No matter where you start your search, it’s important to get out there and jump into the job hunt, knowing that the ADA, and yourself, can demand the necessary accommodations for equal opportunity in the workforce.

Popliteal Pterygium Syndrome

What is popliteal pterygium syndrome?
Popliteal pterygium syndrome is a condition that affects the development of the face, skin, and genitals. Most people with this disorder are born with a cleft lip, a cleft palate (an opening in the roof of the mouth), or both. Affected individuals may have depressions (pits) near the center of the lower lip, which may appear moist due to the presence of salivary and mucous glands in the pits. Small mounds of tissue on the lower lip may also occur. In some cases, people with popliteal pterygium syndrome have missing teeth.

Individuals with popliteal pterygium syndrome may be born with webs of skin on the backs of the legs across the knee joint, which may impair mobility unless surgically removed. Affected individuals may also have webbing or fusion of the fingers or toes (syndactyly), characteristic triangular folds of skin over the nails of the large toes, or tissue connecting the upper and lower eyelids or the upper and lower jaws. They may have abnormal genitals, including unusually small external genital folds (hypoplasia of the labia majora) in females. Affected males may have undescended testes (cryptorchidism) or a scrotum divided into two lobes (bifid scrotum).

People with popliteal pterygium syndrome who have cleft lip and/or palate, like other individuals with these facial conditions, may have an increased risk of delayed language development, learning disabilities, or other mild cognitive problems. The average IQ of individuals with popliteal pterygium syndrome is not significantly different from that of the general population.

How common is popliteal pterygium syndrome?
Popliteal pterygium syndrome is a rare condition, occurring in approximately 1 in 300,000 individuals.

What genes are related to popliteal pterygium syndrome?
Mutations in the IRF6 gene cause popliteal pterygium syndrome. The IRF6 gene provides instructions for making a protein that plays an important role in early development. This protein is a transcription factor, which means that it attaches (binds) to specific regions of DNA and helps control the activity of particular genes.

The IRF6 protein is active in cells that give rise to tissues in the head and face. It is also involved in the development of other parts of the body, including the skin and genitals.

Mutations in the IRF6 gene that cause popliteal pterygium syndrome may change the transcription factor’s effect on the activity of certain genes. This affects the development and maturation of tissues in the face, skin, and genitals, resulting in the signs and symptoms of popliteal pterygium syndrome.

Wheelchair Accessibility

Wheelchair accessibility helps people who can no longer get around without support. You can optimize your home and your daily life to make things easier for your loved one if they are not as mobile as they use to be.

Wheelchair Ramps
Ramps make it much easier for people in wheelchairs to exit and enter their homes. The material for the ramps should be standard wood, but you can use protective coatings on the ramp to make sure that the weather doesn’t weaken it. You must check to see if the person using the wheelchair can easily push themselves up the ramp and down the ramp without the wheels getting snagged on anything.

Don’t space the wooden planks too far apart. The gaps in the wood can cause a bumpy ride at the least and a health hazard if you’re not careful. You can even buy portable ramps that you can take with you on road trips. The person in the wheelchair may also need help getting into vehicles and other establishments. Portable ramps can certainly come in handy at the most inconvenient times.

Wider Doors Inside
You must ensure that doors have easy paths of travel. Don’t place boxes or other items close to doors when a person using a wheelchair will have to navigate through the opening. The doors in the home may need to be wider if they are less than 32 inches wide. The wheelchair user must have plenty of space to get through.

Wider doors can also make a people feel more comfortable inside the home. The bare minimum amount of space can make them feel cramped and closed in. They should at least be given some freedom of movement even though they are using a wheelchair.

Wider Hallways
Wider hallways are also essential to the comfort and well-being of someone who gets around in a wheelchair. The wheelchair must be able to move freely through the halls with plenty of space to spare. Make sure there is at least 36 inches of space between the walls in the hallways.

You might also need wider hallways if the wheelchair will need to turn corners to get to different rooms. It can be difficult for a wheelchair to navigate through tight corridors without rounded corners. Leaving plenty of space will ensure a happier and healthier experience.

Bathroom Changes
It’s time to get rid of that bathtub in your bathroom. Showers are much more accessible for wheelchairs than bathtubs. You can also install hand-held shower heads and seats so that people using wheelchairs can have a better chance at bathing themselves. The person will be much more comfortable in the shower since they can just open the door and wheel their way in.

Buckle Up!

No matter how the wheelchair is secured to the vehicle, a properly used and positioned crashworthy seatbelt, consisting of pelvic and upper-torso belts, is absolutely essential. Seatbelts are by far the most effective occupant restraint system for protecting occupants in crashes and reduce the risk of total injuries by more that 50%. They prevent occupants’ ejection from and minimize injurious contact within the vehicle.

To be most effective, the lap belt must be placed low on the pelvis near the top of the thighs, and the shoulder belt should cross the middle of one shoulder and the breastbone and connect to the lap belt near the occupant’s hip.

While wheelchair securement and occupant restraints are important, a growing body of evidence suggests a large proportion of serious injuries to wheelchair-seated travelers is due to a lack of proper seat belt use and/or improper positioning of the seatbelt. In many cases, wheelchair features such as armrests and wheels can interfere with proper seatbelt routing and placement, and care must be taken to ensure that seatbelts are properly used and positioned. This may require placing the lap belt between the back of the armrest and the seatback post, or threading the lap belt’s end through openings below the armrest before attaching the belt to the vehicle’s anchor points. It is also important to place the seatbelt buckle in direct contact with the occupant and not where it may contact rigid wheelchair components during a crash. Never route seat belts outside the large wheels or over armrests.

Even if you are only driving a short distance under ideal conditions, fasten your seat belt.
You should never drive until everyone has a seat belt properly fastened.

Carry The Fallen – Boston Marathon Route

 Carry The Fallen

Active Heroes, a 501c3 charity presents the Carry The Fallen Ruck-March event. Carry The Fallen is a team hiking event lasting 3, 6, 12 or 22 hours (depending on the event) that is part of the charity’s Active Challenges program that builds camaraderie, wellness, morale and connects military families with supporters and peer mentors. Participants carry weight to symbolize the emotional weight that many veterans are carrying after war.  22 veterans a day take their own lives and Active Heroes is working towards reducing these numbers with a one of a kind Military Family Retreat Center located in Shepherdsville, KY. Carry the Fallen participants can Fund-Raise towards building the retreat center after registering.

Register for free or register to become an Active Heroes Ambassador for $50 and you will be sent a Carry The Fallen shirt, bumper sticker, refrigerator magnet, flyers (donation Cards), and an Ambassador Booklet containing suicide prevention information and peer mentor campaign information. Shipping is included in the $50 donation.

Earn your Carry The Fallen Patch by fundraising $100 or more and completing a 3, 6, 12 or 22 hour long Carry The Fallen Ruck-March event! Carry The Fallen Team Leaders will distribute patches, only to participants who raise $100, during the closing ceremony of the event.  Participants can even make their own donations towards the patch on their fundraising page, or keep sharing their fundraising page on social media, emails and in other conversations to raise the $100 minimum donation amount.

Carry the Fallen 3, 6, 12, 22

Carry The Fallen – Boston Marathon Route
March 21, 2015
6:00am – 7:00pm

Active Heroes – Team Minuteman (All participants) will be rucking the Boston Marathon route starting at 1 Ash St. Hopkinton MA 01748 and finishing at 659 Boylston Street Boston, MA 02116.  There will be on street parking at the starting point.  Transportation back to starting point is up to participants to schedule.  Some people drop cars at the finish line in Boston to help shuttle people back to the beginning.  Please help carpool if you can.  The team will be followed by an RV during the hike to help assist people who drop out during the 26.2 miles. The hike moves as fast as the slowest person.

Carry as much weight that you can carry for the entire march but make sure you don’t over do it for safety. Please wear an Active Heroes or Carry The Fallen shirt to the event to help spread awareness about reducing veteran suicide through Active Heroes. You can find more shirts and gear at: www.ActiveHeroes.org and search for store. Learn more about the Carry The Fallen event at www.CarryTheFallen.org

Safety is very important. Depending on your hiking event the terrain might be on road ways and traffic can be present. Children are allowed to the event but please keep an eye on them for safety. Flashing lights or reflectors belts are encouraged for early morning hiking or night time events. bring plenty of water, sports drinks with no excess sodium, first aide kit and energy snacks. Bathroom breaks are generally planned but keep in mind that Team Leaders are working to keep everyone together to accomplish the long distance event, so stops wont be frequent unless of medical emergencies.

Above all, the Carry the Fallen events are extremely fun and the entire family can join. Your help is needed to build the retreat to help reduce Veteran Suicide. Learn More About the Military Family Retreat here: www.ActiveHeroes.org

Is Your Business Accessible and Safe?

More awareness has been focused on making buildings accessible and safe for those with disAbilities. With the passage of the Americans with Disabilities Act, businesses must provide everyone equal access around their property. However, despite these regulations there are still businesses that have failed to meet federal guidelines. For those failing to comply, fines and penalties can be severe and can potentially lead to the closure of the business if changes are not made in a timely manner. According to the ADA, businesses are required to make reasonable accommodations allowing everyone to enjoy the goods and services provided by the business. In order to comply, several areas must be addressed.

Entryways
Wheelchair users find many businesses almost impossible to enter. If the only access to a building is steps or stairs, the ADA requires that a wheelchair-accessible ramp be provided to allow easy access to the building.

Auxiliary Communication Assistance
For those individuals who are blind or need other assistance with communication, the ADA also requires businesses to make the appropriate accommodations for them as well. Signage outside offices, bathrooms and other areas is required to have words in Braille, and employees who have communication disabilities are also required to have access to closed-captioning and sign-language interpretation if needed.

Bathrooms
For years bathrooms in almost all businesses were obstacles that many found to be nearly insurmountable challenges. However, with the passage of the ADA, using a bathroom has become much easier for both customers and employees with a disability. According to ADA regulations, all bathrooms should have at least one stall that is designed for people with a disability. The door to the stall is required to be wide enough for a mobility device to easily go through, and the stall large enough to have room for the individual and another person if necessary to assist. Hand rails are also required for safety and comfort, and the sinks are to be low enough for a person using a wheelchair to easily reach and use.

Parking
All states require businesses to provide parking spaces that are designated exclusively for drivers with a disability. The parking spaces should be clearly marked and located as close to the business as possible, and are usually near a wheelchair-accessible ramp. The penalties for parking in a handicapped parking space can be severe, often resulting in a fine of $500 and the vehicle being towed away at the owner’s expense.

Aisles
While the least-regulated aspect of most businesses, aisles still fall under ADA rules and must be in compliance with federal regulations. Under ADA rules, aisles in retail businesses or others as well must be free of any barriers that would prohibit a person in a wheelchair from gaining access to that area. However, it’s recommended by most experts that in addition to being barrier-free, all aisles be clear of clutter and be made wide enough for shoppers using a mobility device to easily navigate. While not required by law, doing so is seen as an act of courtesy and respect for employees and customers.

Fines and Penalties
To ensure your business is in compliance with ADA laws, it’s a good idea to have a safety audit. Hiring an expert to conduct a safety and accessibility audit is the best way to ensure your business is in full compliance and is in no way violating ADA regulations. Under Title III of the ADA, the maximum penalty for a first violation of ADA rules is set at $75,000. For a second violation, the fine goes up to $150,000. If the Department of Justice finds evidence of repeated violations, the fines can accrue significantly and can greatly affect businesses that are operating with profit margins that have little or no room for error. The federal government is currently very aggressive with its ADA enforcement, with healthcare businesses currently being targeted for investigation due to the DOJ’s Barrier-Free Health Care Initiative.

While much has been done to make the world an easier place for people of all abilities to live and work, it is clear there is still much work left to be done. However, with continued ADA enforcement equal access is getting easier by the day.

Neuromuscular Disorders

Neuromuscular disorders affect the nerves that control your voluntary muscles. Voluntary muscles are the ones you can control, like in your arms and legs. Your nerve cells, also called neurons, send the messages that control these muscles. When the neurons become unhealthy or die, communication between your nervous system and muscles breaks down. As a result, your muscles weaken and waste away. The weakness can lead to twitching, cramps, aches and pains, and joint and movement problems. Sometimes it also affects heart function and your ability to breathe.

Examples of neuromuscular disorders include

Many neuromuscular diseases are genetic, which means they run in families or there is a mutation in your genes. Sometimes, an immune system disorder can cause them. Most of them have no cure. The goal of treatment is to improve symptoms, increase mobility and lengthen life.

Chronic Fatigue Syndrome

Chronic fatigue syndrome, or CFS, is a devastating and complex disorder. People with CFS have overwhelming fatigue and a host of other symptoms that are not improved by bed rest and that can get worse after physical activity or mental exertion. They often function at a substantially lower level of activity than they were capable of before they became ill.

Besides severe fatigue, other symptoms include muscle pain, impaired memory or mental concentration, insomnia, and post-exertion malaise lasting more than 24 hours. In some cases, CFS can persist for years.

Researchers have not yet identified what causes CFS, and there are no tests to diagnose CFS. However, because many illnesses have fatigue as a symptom, doctors need to take care to rule out other conditions, which may be treatable.

While a single cause for CFS may yet be identified, another possibility is that CFS has multiple triggers. Some of the possible causes of CFS might be:

  • infections
  • immune dysfunction
  • abnormally low blood pressure that can cause fainting (neurally mediated hypotension)
  • nutritional deficiency
  • stress that activates the axis where the hypothalamus, pituitary, and adrenal glands interact (the HPA axis)

Sypmtoms
The primary symptom of CFS is unexplained, severe fatigue lasting at least 6 months that is not improved by bed rest and that can get worse after physical activity or mental exertion. Individuals with CFS experience a fatigue so strong that their activity levels and stamina decline dramatically. However, fatigue is not the only symptom, and for some patients may not be the symptom that bothers them the most.

As stated in the 1994 case definition, the fatigue of CFS is accompanied by at least 4 of 8 characteristic symptoms lasting at least 6 months. These symptoms include:

  • post-exertion malaise lasting more than 24 hours
  • un-refreshing sleep
  • significant impairment of short-term memory or concentration
  • muscle pain
  • pain in the joints without swelling or redness
  • headaches of a new type, pattern, or severity
  • tender lymph nodes in the neck or armpit
  • a sore throat that is frequent or recurring

The symptoms listed above are the symptoms used to diagnose this illness. However, many CFS patients may experience other symptoms, including irritable bowel, depression or other psychological problems, chills and night sweats, visual disturbances, brain fog, difficulty maintaining upright position, dizziness, balance problems, fainting, and allergies or sensitivities to foods, odors, chemicals, medications, or noise.

Traumatic Brain Injury Awareness

Traumatic brain injury, often referred to as TBI, is most often an acute event similar to other injuries. That is where the similarity between traumatic brain injury and other injuries ends. One moment the person is normal and the next moment life has abruptly changed.

In most other aspects, a traumatic brain injury is very different. Since our brain defines who we are, the consequences of a brain injury can affect all aspects of our lives, including our personality. A brain injury is different from a broken limb or punctured lung. An injury in these areas limit the use of a specific part of your body, but your personality and mental abilities remain unchanged. Most often, these body structures heal and regain their previous function.

Brain injuries do not heal like other injuries. Recovery is a functional recovery, based on mechanisms that remain uncertain. No two brain injuries are alike and the consequence of two similar injuries may be very different. Symptoms may appear right away or may not be present for days or weeks after the injury.

One of the consequences of brain injury is that the person often does not realize that a brain injury has occurred.

March Proclaimed Red Cross Month: Red Cross Recognizes Every Day Heroes

President Barack Obama has proclaimed March as Red Cross Month across the country, a tradition upheld by each of our nation’s leaders since President Franklin D. Roosevelt first recognized Red Cross Month in 1943.

“For more than 130 years, the devoted women and men of the American Red Cross have responded to challenges at home and abroad with compassion and generosity. In times of conflict and great tragedy, they deliver humanitarian relief, save lives, and offer hope for a brighter tomorrow,” the proclamation reads. “Their service has meant so much to so many, and it reflects a fundamental American truth: we look out for one another and we do not leave anyone behind. This month, we renew our sense of common purpose and honor all those whose sacrifices have made our society more prepared, resilient, and united.” Read the entire proclamation here.

The Red Cross has a long-standing relationship with the White House dating back to 1913 and President Woodrow Wilson. In 1906 a largely ceremonial office of president was added to the Red Cross leadership. In 1913, President Wilson agreed to serve in this role. This began a tradition that continues today whereby the president of the United States serves as honorary chairman of the American Red Cross. The Red Cross is not a government agency and does not receive a regular appropriation from Congress.

The American Red Cross responds to nearly 70,000 disasters every year. It provides 24-hour support to members of the military, veterans and their families at home and around the world; collects and distributes about 40 percent of the nation’s blood supply and trains millions of people in first aid, water safety and other life-saving skills.

During Red Cross Month, the American Red Cross is recognizing the country’s everyday heroes – heroes who reach out to help people in need. These are the people who –

  • Help disaster victims get on the road to recovery.
  • Give blood to help a hospital patient
  • Brighten the day of an injured service member who is in a hospital far from home.
  • Take one of our lifesaving classes and step forward to assist someone having a heart attack or to save a drowning child.

Red Cross Month is a great time to become part of the Red Cross. You can work on a preparedness plan with members of your household so you are ready for emergencies. You can become a Red Cross volunteer. Or you can give blood or a financial donation.

March Is Developmental Disabilities Awareness Month

President Ronald Reagan declared March to be Developmental Disabilities Awareness Month in 1987, urging “all Americans to join me in according to our fellow citizens with such disabilities both encouragement and the opportunities they need to lead productive lives and to achieve their full potential.”

What is a Developmental Disability?

Definition of Developmental Disability
Developmental Disability means a disability that is manifested before the person reaches twenty-two (22) years of age, which constitutes a substantial disability to the affected individual, and is attributable to mental retardation or related conditions which include cerebral palsy, epilepsy, autism or other neurological conditions when such conditions result in impairment of general intellectual functioning or adaptive behavior similar to that of a person with mental retardation. Unless otherwise specifically stated, the federal definition of “Developmental Disability” found in 42 U.S.C. 6000, et seq., shall not apply.

  • A. Impairment of general intellectual functioning means that the person has been determined to have an intellectual quotient equivalent which is two or more standard deviations below the mean (70 or less assuming a scale with a mean of 100 and a standard deviation of 15), as measured by an instrument which is standardized, appropriate to the nature of the person’s disability, and administered by a qualified professional. The standard error of measurement of the instrument should be considered when determining the intellectual quotient equivalent. When an individual’s general intellectual functioning cannot be measured by a standardized instrument, then the assessment of a qualified professional shall be used.
  • B. “Adaptive behavior similar to that of a person with mental retardation” means that the person has overall adaptive behavior which is two or more standard deviations below the mean in two or more skill areas (communication, self-care, home living, social skills, community use, self-direction, health and safety, functional academics, leisure, and work), as measured by an instrument which is standardized, appropriate to the person’s living environment, and administered and clinically determined by a qualified professional. These adaptive behavior limitations are a direct result of, or are significantly influenced by, the person’s substantial intellectual deficits and may not be attributable to only a physical or sensory impairment or mental illness.

“Substantial intellectual deficits” means an intellectual quotient that is between 71 and 75 assuming a scale with a mean of 100 and a standard deviation of 15, as measured by an instrument which is standardized, appropriate to the nature of the person’s disability, and administered by a qualified professional. The standard error of measurement of the instrument should be considered when determining the intellectual quotient equivalent.

 

Definition of Developmental Delay
A developmental delay is the slowed or impaired development of a child who is under 5 years old and who is at risk of having a developmental disability because of the presence of one or more of the following:

  • Congenital syndromes and conditions associated with delay in development,
  • Metabolic disorders,
  • Prenatal and perinatal infections and significant medical problems,
  • Low birth weight infants weighing less than 1200 grams,
  • Postnatal acquired problems known to result in significant developmental delays, OR:
  • A child less than 5 years old who is delayed in development by 1.5 standard deviations or more in one or more of the following areas; communication, self-help, social-emotional, motor skills, sensory development or cognition, OR
  • A child less than 3 years of age who lives with one or both parents who have a developmental disability.

Multiple Sclerosis Awareness

Multiple sclerosis (MS) is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body.

Types of MS


Four disease courses have been identified in multiple sclerosis: relapsing-remitting MS (RRMS), primary-progressive MS (PPMS), secondary-progressive MS (SPMS), and progressive-relapsing MS. Each of these disease courses might be mild, moderate or severe.

Relapsing-remitting MS (RRMS)
RRMS — the most common disease course — is characterized by clearly defined attacks of worsening neurologic function. These attacks — also called relapses, flare-ups or exacerbations — are followed by partial or complete recovery periods (remissions), during which symptoms improve partially or completely and there is no apparent progression of disease. Approximately 85 percent of people with MS are initially diagnosed with relapsing-remitting MS.

Secondary-progressive MS (SPMS)
The name for this course comes from the fact that it follows after the relapsing-remitting course. Most people who are initially diagnosed with RRMS will eventually transition to SPMS, which means that the disease will begin to progress more steadily (although not necessarily more quickly), with or without relapses.

Primary-progressive MS (PPMS)
PPMS is characterized by steadily worsening neurologic function from the beginning. Although the rate of progression may vary over time with occasional plateaus and temporary, minor improvements, there are no distinct relapses or remissions. About 10 percent of people with MS are diagnosed with PPMS.

Progressive-relapsing MS (PRMS)
PRMS — the least common of the four disease courses — is characterized by steadily progressing disease from the beginning and occasional exacerbations along the way. People with this form of MS may or may not experience some recovery following these attacks; the disease continues to progress without remissions.

 For More Information please contact the The National MS Society

Rare Disease Day

Rare Disease Day

Rare Disease Day takes place on the last day of February each year.

The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.

The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.

Since Rare Disease Day was first launched by EURORDIS and its Council of National Alliances in 2008, thousands of events have taken place throughout the world reaching hundreds of thousands of people and resulting in a great deal of media coverage.

The political momentum resulting from Rare Disease Day also serves advocacy purposes. It has notably contributed to the advancement of national plans and policies for rare diseases in a number of countries.

Even though the campaign started as a European event, it has progressively become a world phenomenon, with the USA joining in 2009, and participation in a record-breaking 84 countries around the world in 2014. We hope many more will join in 2015. Some countries have decided to raise rare disease awareness further, for example, Spain declared 2013 as the National Year for Rare Diseases.

The objective is for the World Health Organization to recognize the last day of February as the official Rare Disease Day and to raise increasing awareness for Rare Diseases worldwide.

On rarediseaseday.org you can find information about the thousands of events happening around the world to build awareness for people living with a rare disease and their families. If you are planning an event, you can register your event details on their Post your Event page to get your event listed on the site.

Wheelchair Securement Systems

Securing a person and their wheelchair inside a wheelchair accessible vehicle isn’t much fun, especially if you do it several times a day, but it can be a lifesaver in the event of an accident or sudden stop. “Wheelchair tie-downs,” “wheelchair docking systems” and “wheelchair tie-down straps” are systems used to secure a wheelchair when in motion.

Although most securement systems have a universal design to accommodate almost all wheelchairs, it is important to understand the different kinds.

The three main types of wheelchair tie-downs are non-retractable tie-downs, retractable tie-downs and electric/automatic docking systems.

  • The non-retractable strap is a 4-point system. It is the most basic and the least expensive. You must get the wheelchair into the right position to tighten and release the straps. Since the straps do not retract into a housing, they can get in the way.
  • The simple-to-use retractable tie-down offers a tie-down on four points of the wheelchair and four straps. “Retractable” means that the strap retracts into a housing where it can be tightened and/or released.
  • Automatic docking systems are more popular and allow the wheelchair to be secured just by pushing it into a pre-determined position. The wheelchair slides into position and locks automatically. For wheelchair users who are driving, these systems are required for them to be able to secure their wheelchair without assistance.

A variety of add-ons and options are available, including:

  • Audible and visual indicators which advise when the passenger is secure
  • Automatic, self-locking allows one-handed hook-up of wheelchairs
  • Self-tensioning – retractors automatically take up the slack

Some companies that make securement systems include EZ Lock, Q’Straint and Sure-Lok. For more companies call or visit your local mobility equipment dealer.

Miracle Flights for Kids

Founded in 1985, Miracle Flights for Kids® is a national, 501(c)(3), nonprofit organization dedicated to helping low income very sick children overcome financial obstacles that prevent them from accessing proper medical care and second opinions.

Miracle Flights for Kids® helps fly children who are struggling with serious cancers and other debilitating diseases to specialized medical treatment centers across the U.S. Any child needing medical treatment or seeking out a second opinion not available in their own hometown is eligible to apply for a miracle flight.

Given the growing costs of health care today and how often illnesses can lead to monetary troubles, the Miracle Flights for Kids® program serves those families who are unable to manage the financial burden of getting their children to life-saving treatments far from home. That is why miracle flights are so important to all of America’s children. To date, Miracle Flights has coordinated more than 90,000 free flights, flying over 49 million miles.

Miracle Flights for Kids® exists to help families get the care their child so desperately needs, at no cost to them, as many times as required.

Congenital Heart Defects: Frequently Asked Questions

What is a congenital heart defect?

  • Congenital heart defects (CHDs) are problems with the heart’s structure that are present at birth.
  • Common examples include holes in the inside walls of the heart and narrowed or leaky valves. In more severe forms of CHDs, blood vessels or heart chambers may be missing, poorly formed, and/or in the wrong place.

How common are congenital heart defects?

  • CHDs are the most common birth defects. CHDs occur in almost 1% of births.
  • An approximate 100-200 deaths are due to unrecognized heart disease in newborns each year. These numbers exclude those dying before diagnosis.
  • Nearly 40,000 infants in the U.S. are born each year with CHDs.
  • CHDs are as common as autism and about twenty-five times more common than cystic fibrosis.
  • Approximately two to three million individuals are thought to be living in the United States with CHDs. Because there is no U.S. system to track CHDs beyond early childhood, more precise estimates are not available.
  • Thanks to improvements in survival, the number of adults living with CHDs is increasing. It is now believed that the number of adults living with CHDs is at least equal to, if not greater than, the number of children living with CHDs.

What is the health impact of congenital heart defects?

  • CHDs are the most common cause of infant death due to birth defects.
  • Approximately 25% of children born with a CHD will need heart surgery or other interventions to survive.
  • Over 85% of babies born with a CHD now live to at least age 18. However, children born with more severe forms of CHDs are less likely to reach adulthood.
  • Surgery is often not a cure for CHDs. Many individuals with CHDs require additional operation(s) and/or medications as adults.
  • People with CHDs face a life-long risk of health problems such as issues with growth and eating, developmental delays, difficulty with exercise, heart rhythm problems, heart failure, sudden cardiac arrest or stroke.
  • People with CHDs are now living long enough to develop illnesses like the rest of the adult population, such as high blood pressure, obesity and acquired heart disease.
  • CHDs are now the most common heart problem in pregnant women.

What causes congenital heart defects?

  • Most causes of CHDs are unknown. Only 15-20% of all CHDs are related to known genetic conditions.
  • Most CHDs are thought to be caused by a combination of genes and other risk factors, such as environmental exposures and maternal conditions. Because the heart is formed so early in pregnancy, the damage may occur before most women know they are pregnant.
  • Environmental exposures that may be related to risk of having a CHD include the mother’s diet and certain chemicals and medications. Maternal diabetes is a recognized cause of CHDs. Maternal obesity, smoking, and some infections also may raise the risk of having a baby with a CHD. Preventing these risk factors before a pregnancy is crucial.
  • A baby’s risk of having a CHD is increased by 3 times if the mother, father, or sibling has a CHD.

February is National AMD/Low Vision Awareness Month

AMD or Age-Related Macular degeneration is the leading cause of vision loss affecting over 15 million adults over the age of 50.To understand how AMD affects your vision. Take your left hand and cover your left eye, now make a fist with your right hand. Take your right fist and place it directly in front of your right eye. The only thing you should see is images in your periphery or side vision. Now imagine that this is how you are to function within the world.

AMD
Age-Related Macular degeneration can develop so slowly that it’s not until the vision is getting severely bad that the patient will notice. Age-Related Macular Degeneration primarily destroys the sharp central vision controlled by a spot at the back of the retina called the macula. Sharp central vision is needed to read, drive, identify faces, watch television and perform daily tasks that require straight ahead vision.

Risk Factors
The exact cause of AMD is not known. But there are a number of risk factors that may play a role. Some you can help control, some you can’t.The same things that put you at risk for heart disease and stroke also put you at risk for AMD. These include:
• High blood pressure
• High cholesterol
• Obesity
• Smoking
Risks you cannot control include age, family history, gender and race.
Symptoms
AMD symptoms include blurriness, wavy lines, or a blind spot. You may also notice visual distortions such as:
• Straight lines or faces appearing wavy
• Doorways seeming crooked
• Objects appearing smaller or farther away
If you notice any of these symptoms, you should see an ophthalmologist as soon as possible. If you are diagnosed with wet AMD, it is important to see a Retina Specialist for the most appropriate care

Living with AMD
Make the Most of your Vision. Millions of people have macular degeneration and millions of them continue to do everything they always did. Because you never become blind with AMD, there is always sight available if you know how to use it.
The peripheral vision you have helps you to get around the house and outside. There are devices and techniques for everything from reading to cooking to watching sports on TV. You may have to stop driving at some point, but for everything else, there is a solution.
If you are losing sight, there are some simple things you can do on your own to improve your ability to see. Don’t become discouraged! You will probably need to try out multiple devices before you find one that works for you. These range from magnifiers that are held in the hand or suspended on a stand to devices that attach to your glasses or computers that help you to read.

Things you can do on your own:
• Improve the lighting in your home and office. This may not necessarily mean that you should increase the lighting or the brightness. Glare is often a problem for people with low vision. You’ll need to experiment to see what works best for you. Special lights are available through many catalogs.
• Use high contrast for reading and writing. Write in large letters with a broad felt tip pen on white or light paper.
• Use large print books or try other media, like books on tape, disk or mp3. Most libraries have a section of these or you can find them online. There are also special libraries for visually impaired.
• Use a hand held magnifier. In the beginning, you may find some help at your local drug store by trying out the various small hand-held magnifiers available. If one of them helps your vision, you should certainly use it. Other magnifying devices may be more useful if your vision is very bad.

January Is Glaucoma Awareness Month

Glaucoma is a very misunderstood disease. Often, people don’t realize the severity or who is affected.

Key Facts About Glaucoma

  • Glaucoma is a leading cause of blindness
    Glaucoma can cause blindness if it is left untreated. And unfortunately approximately 10% of people with glaucoma who receive proper treatment still experience loss of vision.
  • There is no cure (yet) for glaucoma
    Glaucoma is not curable, and vision lost cannot be regained. With medication and/or surgery, it is possible to halt further loss of vision. Since open-angle glaucoma is a chronic condition, it must be monitored for life. Diagnosis is the first step to preserving your vision.
  • Everyone is at risk for glaucoma
    Everyone is at risk for glaucoma from babies to senior citizens. Older people are at a higher risk for glaucoma but babies can be born with glaucoma (approximately 1 out of every 10,000 babies born in the United States). Young adults can get glaucoma, too. African Americans in particular are susceptible at a younger age.
  • There may be no symptoms to warn you
    With open-angle glaucoma, the most common form, there are virtually no symptoms. Usually, no pain is associated with increased eye pressure. Vision loss begins with peripheral or side vision. You may compensate for this unconsciously by turning your head to the side, and may not notice anything until significant vision is lost. The best way to protect your sight from glaucoma is to get tested. If you have glaucoma, treatment can begin immediately.

Some Statistics About Glaucoma

  • It is estimated that over 2.2 million Americans have glaucoma but only half of those know they have it.
  • In the U.S., more than 120,000 are blind from glaucoma, accounting for 9% to 12% of all cases of blindness.
  • Glaucoma is the second leading cause of blindness in the world, according to the World Health Organization.
  • After cataracts, glaucoma is the leading cause of blindness among African Americans.
  • Blindness from glaucoma is 6 to 8 times more common in African Americans than Caucasians.
  • African Americans are 15 times more likely to be visually impaired from glaucoma than Caucasians.
  • The most common form, open-angle glaucoma, accounts for 19% of all blindness among African Americans compared to 6% in Caucasians.
  • Other high-risk groups include: people over 60, family members of those already diagnosed, diabetics, and people who are severely nearsighted.
  • Estimates put the total number of suspected cases of glaucoma at over 60 million worldwide.

 

Holiday Travel Safety Tips

With Christmas and New Year’s swiftly approaching, multitudes of people will be traveling.  AAA predicts 98.6 million Americans will travel this holiday season between December 23, 2014 and January 4, 2015.  The organization also anticipates that 91% will travel by car, truck, or van, 6% will travel by air, and 3% will take a bus or train.  All of this travel traffic can make it treacherous to get around if you are not paying attention.

In addition to the higher risk of traveling during the holidays with the extra people on the road, the weeks before can also be dangerous as many folks are out shopping and may be distracted as the frantically rush around searching for the perfect gifts.

Awareness of the days with the highest number of vehicles on the road and staying alert are extremely important strategies to staying safe while traveling.  Other strategies for staying safe are:

  • Try to travel on days and at times that are not peak travel days and times.  If most people will be traveling Wednesday through Sunday, try to travel Tuesday through Saturday.  Strive to travel early in the day and at times when traffic volume is the lowest.
  • Plan your route around malls, big stores, airports, and major sporting venues to avoid the crowds and congestion.
  • Before a long drive, make sure you get plenty of sleep and have something to eat.
  • Take breaks every few hours, even if you’re not sleepy. Get out and walk around to stretch your legs.  Play Frisbee or catch with the kids.  Have a snack.  It will keep you more alert.
  • Make sure your vehicle is in prime condition before the trip. Change the oil, if needed.  Make sure the fluid levels and gas tank are full and that tires are properly inflated.
  • Share the driving. If you are alone, turn on the music and crack the window to help stay alert.  You may want to use your foot on the gas pedal to control the speed and not the cruise control to keep yourself more vigilant.
  • Make sure everyone is buckled up.
  • Make sure the vehicle is stocked with a map or atlas, jumper cables, spare tire, wiper fluid, first aid kit, pillow, blanket, and snacks. Bringing snacks from home is usually healthier and cheaper than getting them from a vending machine.
  • If traveling with children, pack activities to entertain them such as movies, coloring books, toys, activity books, etc. Remember to stop for frequent breaks and to have some fun.
  • Start looking for a gas station when your gas gauge reads ¼ tank. Don’t wait until you are on empty to fill up. The next exit with a gas station may be quite a distance away.

COPD: Emphysema Awareness

Chronic obstructive pulmonary disease (COPD) is one of the leading cause of death in the U.S. and affects more than 12 million Americans.  COPD – which includes emphysema and chronic bronchitis – is a term used to describe the obstruction of airflow.

COPD cannot be cured, but it can be treated. Early detection and diagnosis is the key to successful management of this chronic disease.

Emphysema is a long-term, progressive disease of the lungs that primarily causes shortness of breath due to over-inflation of the alveoli (air sacs in the lung). In people with emphysema, the lung tissue involved in exchange of gases (oxygen and carbon dioxide) is impaired or destroyed. Emphysema is included in a group of diseases called chronic obstructive pulmonary disease or COPD (pulmonary refers to the lungs). Emphysema is called an obstructive lung disease because airflow on exhalation is slowed or stopped because over-inflated alveoli do not exchange gases when a person breaths due to little or no movement of gases out of the alveoli.

Emphysema changes the anatomy of the lung in several important ways. This is due to in part to the destruction of lung tissue around smaller airways. This tissue normally holds these small airways, called bronchioles, open, allowing air to leave the lungs on exhalation. When this tissue is damaged, these airways collapse, making it difficult for the lungs to empty and the air (gases) becomes trapped in the alveoli.

Normal lung tissue looks like a new sponge. Emphysematous lung looks like an old used sponge, with large holes and a dramatic loss of “springy-ness” or elasticity. When the lung is stretched during inflation (inhalation), the nature of the stretched tissue wants to relax to its resting state. In emphysema, this elastic function is impaired, resulting in air trapping in the lungs. Emphysema destroys this spongy tissue of the lung and also severely affects the small blood vessels (capillaries of the lung) and airways that run throughout the lung. Thus, not only is airflow affected but so is blood flow. This has dramatic impact on the ability for the lung not only to empty its air sacs called alveoli (pleural for alveolus) but also for blood to flow through the lungs to receive oxygen.

November is Caregiver Awareness Month

November is Caregiver Awareness Month
Each year, more and more Americans are caring for a loved one with a chronic condition, disAbility, or the frailties of old age.  There are as many as 90 million family caregivers in the U.S. today.

  • Two out of every 5 adults are family caregivers.  39% of all adult Americans are caring for a loved one who is sick or disAbled – up from 30% in 2010.
  • Alzheimer’s is driving the numbers up.  More than 15 million family caregivers are providing care to more than 5 million loved ones with Alzheimer’s disease.
  • But it’s not just the elderly who need caregiving.  The number of parents caring for children with special needs is increasing, too, due to the rise in cases of many childhood conditions.
  • Wounded veterans require family caregivers, too.  As many as 1 million Americans are caring in their homes for service members from the Iraq and Afghanistan wars who are suffering from traumatic brain injury, post-traumatic stress disorder, or other wounds and illnesses.
  • And it’s not just women doing the caregiving.  Men are now almost as likely to say they are family caregivers as women are (37% of men; 40% of women). And 36% of younger Americans between ages 18 and 29 are family caregivers as well, including 1 million young people who care for loved ones with Alzheimer’s.
  • Family caregiving is serious work.  Almost half of family caregivers perform complex medical/nursing tasks for their loved ones – such as managing multiple medications, providing wound care, and operating specialized medical equipment.
  • Family caregivers are the backbone of the Nation’s long-term care system. Family caregivers provide $450 billion worth of unpaid care each year.That’s more than total Medicaid funding, and twice as much as homecare and nursing home services combined.

With the ranks of family caregivers growing every year – tens of millions strong – we recognize the importance to the Nation of the role that family caregivers play.

November is National Epilepsy Awareness Month

Epilepsy affects about 2 million people in the United States and is characterized by recurrent, unprovoked seizures. Delayed recognition of these seizures and inadequate treatment increases the risk for additional seizures, disAbility, decreased health-related quality of life and, in rare instances, death.

Although epilepsy can occur at any age, the condition is more likely to begin among children less than 2 years of age and adults older than 65 years. As do many who live with other chronic disorders, those with epilepsy often face challenges related to managing epilepsy treatment, symptoms, disAbility, lifestyle limitations, emotional stress, and stigma.

CDC’s Managing Epilepsy Well (MEW) Network is composed of individuals interested in improving the care of people with epilepsy. MEW Network members, including representatives from U.S. universities, community-based organizations, and CDC are working together to develop and test self-management programs and tools that help people with epilepsy better manage their disorder and improve their quality of life.

MEW programs available to communities include WebEase, UPLIFT, and PEARLS. WebEase (Epilepsy Awareness Support and Education) is an Internet self-management program designed to improve medication adherence, stress management, and sleep. UPLIFT (Using Practice and Learning to Increase Favorable Thoughts) is an Internet and telephone program that combines cognitive behavioral therapy with mindfulness to treat depression in people with epilepsy. PEARLS (Program to Encourage Active Rewarding Lives) is a home-based, collaborative-care depression treatment program for adults with epilepsy.

Interventions that are currently being tested by MEW network researchers include a self-management program that combines self-regulation and social support for adults with refractory epilepsy; an electronic decision-support system for clinics to improve self-management communication and behavior; and a consumer-driven self-management program. New projects include a telephone intervention for rural dwelling adults with epilepsy and cognitive impairment, and self-management training for adults with epilepsy and co-existing serious mental illness.

New York Updates the Handicap Symbol

You see them in parking lots, bathrooms, license plates and public transportation. It’s easily recognizable, yet most don’t think about them too much. It’s the handicap symbol, and in New York it’s getting a fresh look after 45 years.

What started as an illegal art project in Rhode Island by Sara Hendren and Brian Glenney soon transformed into a movement for change recognized by the government. Their original idea was to liven up the “stiff, robotic” look into a more active and human looking symbol. The message is to get away from presenting the look as a disAbility, and rather show that it is still a person in the chair who is still moving forward.

Inspiration for Mobility
An attempt to change the symbol in 1994 was proposed but failed. However, it did succeed as the inspiration for the new design, which was built on a grass-root platform spreading awareness through the right routes to reach real change. The biggest adopter so far is the state of New York, which signed the change into law by Governor Andrew Cuomo. In addition, NFL team Jacksonville Jaguars, the Boys and Girls Club in South Boston, and the Museum of Modern Art had all also updated their handicap logos to the new look.

The language of the symbol is also making a change. Using the word accessible now rather than handicap presents a more positive light on the symbol and thought process alike. The specific look of the logo now has the person leaning forward with arms back and wheel accented to appear spinning so that the overall appearance shows motion.

Handicap Symbol Represents Movement
No movement comes without concerns however, and the main issue presented with the Accessibility Icon Project is that it resembles an athlete and doesn’t represent the disabled as a whole. Though true from this perspective, the designer Sara Hendren pushes to move the focus away from a literal interpretation to its symbolism. The movement is not solely about a new look, but brings attention for us to take action and rethink disAbility in society.

Only time will tell if the project will gain national or even worldwide change. What is known though is that it starts conversations and gives people a new way to look at those different around them.

The History of the Wheelchair

From its early inception to modern design, the world of wheelchairs and mobility solutions has rolled through a very interesting evolution.

We live in a day and age where technology has forged the reality of power chairs, smart chairs and beyond, but history tells us the first known wheelchair, then known as the invalids chair, has developed into an extremely useful resource for people with disAbilities and has fostered a simultaneous campaign to raise awareness and understanding for its users.

The Early Days
It’s predicted that the very first renditions of the wheelchair rolled out in China, though Phillip II of Spain is largely attributed to its mainstream acceptance. Spanish inventors designed the chair for Phillip II, who was suffering from Gout.

No surprise that royalty got its own renditions.

As for the commonwealth, mobility solutions were largely the responsibility of the families and servants of the loved one with a disAbility or up to the individual with the disAbility, themselves. German watchmaker and paraplegic, Stephan Farfler was one such individual who designed a personal solution in 1665. Farfler engineered a hand cranked tricycle — called the manumotive carriage — which is said to have also inspired modern day bicycles.

Bath Chairs and Beyond
In 1783, Englishmen John Dawson invented another three wheeled rendition which he so creatively named the Bath Chair, after the town of Bath, England. The contraption appeared somewhat reminiscent of old-fashioned bathtubs and could be drawn by animals or pushed by hand.

By the late 1800s however, the clunky Bath Chairs were due for a revisit and patents started surfacing for chairs that utilized two larger wheels in the back and smaller casters in front to achieve maneuverability and better comfort for its users. Rubber wheels and pushrims were also added for self-propulsion and independent use.

Wheelchairs as We Know Them
At the turn of the 20th century, wheelchairs began to take the shape of our common perceptions, largely influenced by their need for wounded soldiers and veterans, ripples of the early modern warfare. During these years of conflict, the world experienced an influx in amputations and battle wounds that sparked a growing need for mobility solutions.

In 1916, British inventors were already designing early power chairs and in 1932, Harry Jennings engineered the world’s first folding wheelchair out of tubular steel.

Following the Second World War, Canadian inventor, George Klein, pioneered the world’s first electric power chair to enable veterans returning from battle.

Nowadays technology has empowered wheelchair conversion vans, electric lifts for people with disAbilities, prototype exoskeletons and beyond. From its humble beginnings to modern marvels, the history of wheelchairs has made a grand impact on the world around us.