Tag Archives: ALS

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.

How to adapt your new or pre-owned vehicle to meet your needs after a stroke

Driving after a stroke is often a major concern for survivor’s and their loved ones. It prompts many questions about ability, safety and vehicle options. Often times, the physical disadvantages that result from stroke can compromise a survivor’s ability to operate their vehicle.

Advances in the vehicle modification industry have introduced new driving controls that are giving independence back to stroke survivors that want to drive. They allow them to get back behind the wheel in their own vehicle to go where they want to go, when they want to go.

Innovative vehicle modifications such as hand controls, left-foot accelerators, lifts and mobility seating can transform your personal vehicle into a vehicle that give you more freedom.

Mobility equipment dealers strive to remain at the forefront of the vehicle modification industry by providing cutting-edge technology and a full selection of adaptable equipment for your pre-owned vehicle.

Hand Controls For Stroke Survivors with Limited Use of their Feet
Automotive Innovations is New England’s  #1 hand control installation facility  manufacturer of hand controls and driving aids for the disabled. Hand control systems are specifically designed to give drivers the benefit of controlling a vehicle with both hands on the wheel making for a safer, smoother driving experience.

Unlike other manual and or servo hand control installers in Massachusetts, Rhode Island, Connecticut, Vermont, New Hampshire and Maine, we have the ability to offer a custom fitment to your vehicle and you, for everything from a Fiat 500 to a Lamborghini Aventador no one else has the master craftsman, machining equipment and facility capable of performing a custom installation the way we can.

Push Rock hand controls have a handle in a vertical position; accelerating by rocking back in an arching motion using the fingers and/or the palm. There are several additional options to choose from:

  • Spinner knob: Attached to the steering wheel to allow controlled steering with use of one hand.
  • Single Pin: As an alternative to the spinner knob, this hand control was designed for clients that cannot open their hand fully.
  • Tri Pin: Great for an independent driver. It requires minimal gripping strength and/or reduced wrist stability.
  • V-Grip: This attachment is intended for drivers with moderate gripping strength.
  • Steering Wheel Extension: This device is individually customizable, so you can pick a diameter and height that best suits your needs. The easily removable device is completely compatible with any OEM steering wheel.

Servo electronic mobility controls offers driving control products that are safe and provide piece of mind every time you are on the road.

  • Lever  A gas/brake input with adjustable levels of force and travel from the full gas to the full brake position. It is designed for customers that have a wider range of motion and a larger effort level.
  • One handed steering and gas brake  A input that you can steer that is available in a two-axis configuration for gas/brake and steering It has a adjustable range of motion and very low levels  of force to operate. It is designed and custom build for each customers specific range of motion and abilities.
  • Wheel  A steering input that can be adjusted to less than 2 oz of force at the proper orthotic position of 3 3/8” from center. It is also able to be adaptable for customers that have a wider range of motion.

Left-foot Accelerator
Automotive Innovations offers the best left foot gas pedals with unmatched installations.  Left-foot accelerator are designed to offer a left foot gas pedal which acts exactly like your vehicle’s existing gas pedal. Our Left foot gas pedals are removable with features like a quick-release base so the entire assembly can be removed and re-installed quickly and easily.

Lifts for Stroke Survivors that use Wheelchairs or Walkers
Automotive Innovations can offer more solutions for the transportation of your mobility device than any other dealership in New England.

” Its worth the drive, I live in the western part of Massachusetts and will never trust my van with anyone other than Automotive Innovations. They have been taking care of me and my vans since 1996. When a company comes through for you time and time again whats that worth? For me it’s priceless and the drive is irrelevant.”

Chris P Whately, MA

  • Scooter & Wheelchair Lifts while are not always practical they do work in all types of vehicles. These fold-down wheelchair and scooter lifts make lifting and storing your manual folding wheelchair or scooter possible.

Mobility Seating
The mobility transfer seat is an innovative system for lower vehicles which can provide easer  access to an automotive seat. The seat power rotates out over the doorsill, bridging the gap for a safe transfer onto the seat. These seats are not always practical for every type of vehicle

Our goal is to match your lifestyle and your vehicle with equipment that will deliver independence.

Finding a Dealer That’s Up to Standards

Hand controls, left-foot accelerator, lifts and mobility seating offers opportunities for the stroke survivor to regain their mobility freedom in their pre-owned vehicle. You have just found the best mobility dealer in all of New England that offers a ever evolving selection of adaptable equipment.

It is important to select a reputable dealer to provide the adaptable equipment and installation for your pre-owned vehicle.

  1. Are they members of the National Mobility Equipment Dealers Association (NMEDA) or another organization that has vehicle conversion standards?
  2. Are they Quality Assurance Program (QAP) certified?
  3. Do they provide ongoing service and maintenance?
  4. Do they provide 24/7 emergency service?
  5. Do they provide training on the adaptable equipment?
  6. Can the equipment be transferred to a new vehicle in the future?

Adapting pre-owned vehicles provides stroke survivors with mobility freedom in the vehicle they love and are familiar with.

ALS

ALS

ALS Awareness

ALS (amyotrophic lateral sclerosis) is a devastating progressive neurodegenerative disease which destroys the ability to walk, speak, eat and breathe. ALS was first recognized as a disease in 1869, by Jean-Martin Charcot, a French Neurologist. However, ALS is sometimes referred as Lou Gehrig’s disease; named after Lou Gehrig, a famous baseball first basemen, whose career was stopped in 1939 when he developed ALS at the age of 36. At that time, ALS was given widespread public attention due to the high profile of this baseball player.

The aim of ALS awareness month is to raise awareness about ALS, gather support for those affected by this condition and to encourage funding and research into a treatment or cure.

Raising Awareness About The Effects Of ALS
ALS affects the body by attacking motor neurons (nerve cells) of the brain and spinal cord. Motor neurons are cells which process and transmit signals which help to control muscles. Destruction of motor neuron cells leads to symptoms related to loss of muscle control. Typical symptoms of ALS include inability to walk, speak, eat and even breathe.

As ALS is a progressive disease, more motor neurons are destroyed overtime worsening the symptoms. Difficulty breathing and swallowing are later symptoms; paralysis can also develop. After the onset of this disease, fatality usually occurs within 2-5 years.

Healthy People In Their Prime Can Also Get ALS
ALS typically affects people over the age of 40, including those who were previously enjoyed excellent health in the prime of their lives. Whilst ALS affects a minority of the population (in the US about 30,000 people have this condition), ALS is indiscriminate in the types of people who will be affected by it. Famous people who had ALS include NBA player George Yardley, Senator Jacob Javits and former vice president of the US, Henry Wallace.

ALS can be devastating to both the person and to their friends and family. At present there is no known treatment or cure for ALS. If a cure or greater understanding of ALS is achieved, then it is likely that this will benefit research into related conditions like Parkinson’s, Huntington’s and Alzheimer’s disease. There could be a similar underlying neurodegenerative condition in each of them.

Supporting ALS Awareness Month
Several organizations which represent people with neurodegenerative diseases back ALS Awareness Month to support those with this condition and to raise funds for research into a cure. These include the Muscular Dystrophy Association and the ALS Association who host seminars and other activities throughout the United States, during May.

To coincide with this awareness month, the ALS Association have in more recent years run a campaign, ‘ALS Across America’. Established in 2008, ‘ALS Across America’ aims to raise awareness about ALS by sharing with the media and public the experience people throughout the United States have with ALS. When we become aware of the plight of people with this serious disease, we are more likely to support them and the related organizations which work to find a cure.

A person can get involved in ALS awareness month by:

  • donating money to help fight this disease
  • becoming inspired after reading and listening to stories about people with this condition
  • advocating for people with ALS
  • staying connected with ALS News and Updates
  • getting involved in the 31 ways to fight ALS in 31 days

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.

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.

11th Annual Ride For Hope

11th Annual Ride For Hope

 

11th Annual Ride For HopeIn Loving Memory of John Frontes Sr.

All proceeds to benefit ALS: Lou Gehrig’s Disease

When?
September 21, 2014
Registration begins at 9:00am
Ride Starts at 11:00am

Fee per person: $25.00

Where?
The ride begins and ends at The Mishnock Barn
200 Mishnock Road West Greenwhich, RI 02817

Post Party Includes:
Lunch ~ Live Music *The Allbros Band and The Big River Band*
Raffles ~ Pig Roast ~ Rodeo

Ticket Information
Call Bob Fontes at (401) 822-4917
(401) 263-4626

Website
http://alsrideforhope.weebly.com/

ALS Awareness Month

ALS Awareness Month 2014
ALS (amyotrophic lateral sclerosis) is a devastating progressive neurodegenerative disease which destroys the ability to walk, speak, eat and breathe. ALS was first recognized as a disease in 1869, by Jean-Martin Charcot, a French Neurologist. However, ALS is sometimes referred as Lou Gehrig’s disease; named after Lou Gehrig, a famous baseball first basemen, whose career was stopped in 1939 when he developed ALS at the age of 36. At that time, ALS was given widespread public attention due to the high profile of this baseball player.

The aim of ALS awareness month is to raise awareness about ALS, gather support for those affected by this condition and to encourage funding and research into a treatment or cure.

Raising Awareness About The Effects Of ALS
ALS affects the body by attacking motor neurons (nerve cells) of the brain and spinal cord. Motor neurons are cells which process and transmit signals which help to control muscles. Destruction of motor neuron cells leads to symptoms related to loss of muscle control. Typical symptoms of ALS include inability to walk, speak, eat and even breathe.

As ALS is a progressive disease, more motor neurons are destroyed overtime worsening the symptoms. Difficulty breathing and swallowing are later symptoms; paralysis can also develop. After the onset of this disease, fatality usually occurs within 2-5 years.

Healthy People In Their Prime Can Also Get ALS
ALS typically affects people over the age of 40, including those who were previously enjoyed excellent health in the prime of their lives. Whilst ALS affects a minority of the population (in the US about 30,000 people have this condition), ALS is indiscriminate in the types of people who will be affected by it. Famous people who had ALS include NBA player George Yardley, Senator Jacob Javits and former vice president of the US, Henry Wallace.

ALS can be devastating to both the person and to their friends and family. At present there is no known treatment or cure for ALS. If a cure or greater understanding of ALS is achieved, then it is likely that this will benefit research into related conditions like Parkinson’s, Huntington’s and Alzheimer’s disease. There could be a similar underlying neurodegenerative condition in each of them.

The Event ‘Walk To Defeat ALS’ Helps Raise Awareness & Support For People With ALS

Supporting ALS Awareness Month
Several organizations which represent people with neurodegenerative diseases back ALS Awareness Month to support those with this condition and to raise funds for research into a cure. These include the Muscular Dystrophy Association and the ALS Association who host seminars and other activities throughout the United States, during May.

To coincide with this awareness month, the ALS Association have in more recent years run a campaign, ‘ALS Across America’. Established in 2008, ‘ALS Across America’ aims to raise awareness about ALS by sharing with the media and public the experience people throughout the United States have with ALS. When we become aware of the plight of people with this serious disease, we are more likely to support them and the related organizations which work to find a cure.

A person can get involved in ALS awareness month by:

  • donating money to help fight this disease
  • becoming inspired after reading and listening to stories about people with this condition
  • advocating for people with ALS
  • staying connected with ALS News and Updates
  • getting involved with various events to help raise awareness
  • participating in ‘Walk to Defeat ALS’

National Disability Employment Awareness Timeline

National Disability Employment Awareness Month TimelineThis year’s theme is “Because We are EQUAL to the Task.” This theme mirrors the reality that people with disabilities have the talent, education, desire, training, and experience to be successful in the workplace.

Presidential Proclamation – NDEAM 2013

National Disability Employment Awareness Month, 2013
By the President Of The United States Of America
A Proclamation

Our Nation has always drawn its strength from the differences of our people, from a vast range of thought, experience, and ability.  Every day, Americans with disabilities enrich our communities and businesses.  They are leaders, entrepreneurs, and innovators, each with unique talents to contribute and points of view to express.  During National Disability Employment Awareness Month, we nurture our culture of diversity and renew our commitment to building an American workforce that offers inclusion and opportunity for all.

Since the passage of the Americans with Disabilities Act, we have made great progress in removing barriers for hardworking Americans.  Yet today, only 20 percent of Americans with disabilities, including veterans who became disabled while serving our country, participate in our labor force.  We need their talent, dedication, and creativity, which is why my Administration proudly supports increased employment opportunities for people with disabilities.  To that end, I remain dedicated to implementing Executive Order 13548, which called on Federal agencies to increase recruitment, hiring, and retention of people with disabilities.  As a result of our efforts, the Federal Government is hiring people with disabilities at a higher rate than at any point in over three decades.  Most recently, we updated the rules to make sure Federal contractors and subcontractors are doing more to recruit, hire, and promote qualified individuals with disabilities, including disabled veterans.  And thanks to the Affordable Care Act, States are taking advantage of new options to support and expand home and community-based services.

In the years to come, I will remain committed to ensuring the Federal Government leads by example.  This year, as we mark the 40th anniversary of the Rehabilitation Act, I will continue to marshal the full resources of my Administration toward effective and comprehensive implementation.

If we swing wide the doors of opportunity for our family, friends, and neighbors with disabilities, all of us will enjoy the benefits of their professional contributions.  This month, let us uphold the ideals of equal access, equal opportunity, and a level playing field for all Americans.

NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim October 2013 as National Disability Employment Awareness Month.  I urge all Americans to embrace the talents and skills that individuals with disabilities bring to our workplaces and communities and to promote the right to equal employment opportunity for all people.

IN WITNESS WHEREOF, I have hereunto set my hand this thirtieth day of September, in the year of our Lord two thousand thirteen, and of the Independence of the United States of America the two hundred and thirty-eighth.

BARACK OBAMA

National Disability Employment Awareness Month Facts & Figures

National Disability Employment Awareness Month 2013 facts & figuresHeld each October, Disability Employment Awareness Month is a national campaign that raises awareness about disability employment issues. The opportunity to earn a living and be self-supporting is a broadly held goal by Americans. Work is a foundation of stability for individuals and can give one’s life meaning and purpose.  Unfortunately, the rate and level of employment for people with disabilities is staggeringly low. Labor force participation is 22% for people with disabilities as compared to 69% for people without disabilities.

National Disability Employment Awareness Month 2013

Because We Are EQUAL to the Task

2013 NDEAM Poster

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 2013 is “Because We Are EQUAL to the Task.”

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.

Toyota Sienna wheelchair van Information

Toyota Sienna wheelchair van Information newenglandwheelchairvan.com

As you search for the wheelchair conversion van that best fits your needs, the number of choices available to you today is likely overwhelming. We can help make that choice easier for you. Whether you’re interested in new or used wheelchair vans, VMi New England Mobility Center can assist you every step along the way.

Deciding which vehicle manufacturer you should choose is one of the most important steps in the purchasing process. Here’s some useful information about new and used Toyota wheelchair vans that you should consider:

Why Choose A Toyota Wheelchair Van?

Toyota Mobility Wheelchair Vans vminewengland

As soon as the Toyota Sienna Minivan was available, there was a lot of interest generated in using it as a wheelchair conversion van. The good news for Toyota wheelchair van consumers is that from the start, Toyota was working to make the Sienna available with a low-floor wheelchair conversion.

Toyota recognized the potential to broaden Sienna’s market to individuals who are disabled, as well as to the rapidly growing senior population. As a result, Toyota was proactive in seeking out a U.S.-based wheelchair van conversion company to supply this market. Toyota selected Independent Mobility Systems, Inc. (IMS)—located in Farmington, New Mexico—to be their mobility conversion partner because of IMS’ quality manufacturing capabilities and extensive U.S. dealer network. The result was the 2003 IMS Sienna Rampvan.

Conversion Van Features

Interior layout of the Toyota Sienna wheelchair van newenglandwheelchairvan.com

IMS was purchased by The Braun Corporation in 2004,

 Now manufactured by one of the best and largest wheelchair van supplier in the world, the Toyota Sienna with a Vantage Mobility Northstar Conversion is considered one of the premier Toyota wheelchair vans in the industry. This partnership with Toyota has created new wheelchair van manufacturing techniques and processes that have increased quality and shortened lead times, making VMI Northstar and Summit conversions seem like it’s manufactured directly by Toyota. In addition, VMi New England Mobility Center set’s a higher standard than other mobility dealers in the area.

The following are some of the outstanding features of the Toyota Sienna wheelchair van:

By combining the Toyota Sienna with Vmi New England’s superior upgrades to the wheelchair conversion process, the Northstar rampvan provides among the safest, most comfortable Toyota handicap vans available today.

More Choices for Toyota Wheelchair Conversion Vans

While Vantage Mobility has been focusing on Side-Entry, Automatic Wheelchair conversions for the Toyota Sienna, other companies have been building  Rear Entry Wheelchair Van Conversion with a Manual ramp and door. Some companies have always been exclusively focused on the rear-entry market and their customers were asking for product on the Toyota Sienna platform.

 rear-entry-wheelchair-vanpower-electric-ramp http://newenglandwheelchairvan.com

Some people prefer a rear entry wheelchair van because of their parking situation, the environment in which they drive or their budget. With a VMi New England Mobility Center Toyota Sienna, these wheelchair van consumers now have all the benefits of a rear-entry wheelchair conversion van on the Toyota Sienna that they desire.

Models Available for Your Toyota Handicap Conversion Van

Toyota offers 4 Sienna models, and all of them can be converted into a wheelchair accessible minivan:

  • CE: Toyota quality for the budget conscious consumer
  • LE: Familiy value with additional option packages
  • XLE: Well appointed with many standard options included and many more available.
  • Limited: Includes luxury appointments and standard options for those that desire the finest Toyota Sienna available.

Toyota Models Typically in Inventory

Toyota Sienna Wheelchair van 2012 2013 2014 2015

VMi New England Mobility Center works very hard to make sure that we have the Toyota handicap vans that you want in our inventory at our Bridgewater facility. This allows you ample opportunity to see, and drive them and they are available for immediate delivery.

The Toyota Sienna LE and Toyota Sienna XLE are, by far, the most popular models with our customers and we do our best to have these in stock in colors that will please the majority of wheelchair van consumers. For wheelchair van buyers who are seeking the low cost of the Toyota Sienna CE or desire the added features and luxury of the Toyota Sienna XLE, we can place special orders or draw from the inventory of other Mobility Centers across the country.

Depending on availability, we can usually have the exact Toyota handicap van you are looking for within as little as three days.

Toyota Wheelchair Van Conversion Specifications

See the following table for the various conversion options we make available to you for the Toyota Sienna Minivan:

Wheelchair Conversion Vans available on Toyota Sienna
Mobility Conversion Style Product Manual/Automatic
Rear-Entry Wheelchair Ramp Toyota Sienna Manual Ramp
Side-Entry Fold-up Wheelchair Ramp Toyota Sienna Summit Automatic/Power Ramp and Door Conversion Only
Side-Entry In-Floor Wheelchair Ramp Toyota Sienna Northstar Automatic/Power Ramp and Door Conversion Only

We are the oldest NMEDA Quality Assured Dealer in MA

We are your local mobility fitment center offering you the best Lowered Floor vans available. We have been the leader in Custom Handicap van fitment for decades in the New England area including the Toyota Sienna, Honda Odyssey, Dodge Caravan and Chrysler Town & Country power or manual side entry and power or manual rear entry.

adaptive mobility equipment installations are no problem.

Call us for Veterans resources or to find out more about our FREE to Veterans maintenance program.
We are minutes from Providence RI, not far from Warwick RI, very close to Fall River MA, a short drive from Boston MA, right up the road from Cape Cod MA, in the back yard of Plymouth MA , 20 minutes from Attleboro MA, 45 minutes from Worcester MA, a little farther from Springfield, MA, a short boat ride from Mystic CT, and a short helicopter flight from New Haven CT (call ahead of time if you need space to land your helicopter). Call 506-697-6006 for more info.

Wheelchair vans MA for sales and service. Wheelchair vans RI, MA, CT, NH, VT, ME

Declare Your Independence on the 4th of July with a Wheelchair-Accessible Vehicle

  • Wheelchair Van VMi New England Boston Strong
  • Learn more about how to pick the right wheelchair-accessible vehicle that meets your needs.
  • Take a look inside the latest minivans, and other accessible vehicles like a pickup truck, motorcycle or snowmobile.
  • Buy new? Buy used? Convert your current vehicle? Here, we provide some factors to consider before making your decision.

Freedom. That’s what it’s all about, isn’t it? A wheelchair shouldn’t be a barrier to getting out and about, whether for work, day-to-day living or pleasure.

“we will always do all we can to deliver the driving freedom most take for granted to someone in a wheelchair, we are going to change the world one person on at a time” , -Jim Sanders 7/4/1988

Finding the right vehicle means analyzing your needs. Do you want to ride in your wheelchair or transfer to the vehicle’s seat? Will you be the driver or the passenger? If your muscle weakness is still progressing, how will your accessibility needs change down the line — and how can you accommodate them now?

What kind of vehicle do you want: car, minivan, van, truck, SUV or motorcycle? New or used? After-market conversion or built for accessibility from the start? Side or rear entry?

A great place to start answering questions is at the website for Vmi New England

The website is a treasure trove of tips for finding the right vehicle.

For an in-depth look into the life of Ralph Braun, founder and CEO of The Braun Corporation, read CEO with SMA Brings Mobility to All . Learn how he turned his scooter and modified van designs into a multimillion-dollar business — all while battling spinal muscular atrophy.

 

 

Braun Wheelchair Van Mobility Center vmienwenglan.com Boston Strong

Of course, in purchasing a vehicle, monetary concerns always come into play. The New England Mobility Center site offers various directions to take in finding government funding and public assistance. You’ll also find tips on buying auto insurance, numerous blogs on accessible-vehicle-related subjects and info on many travel accessories to make life easier on the road.

Because of the tremendous number of variables in the custom fitment for each persons specific needs, it’s not possible to give exact prices for the minivans featured. However, we can provide some figures that will give you a ballpark idea of accessible vehicle pricing.

  • New side-entry converted minivans range from around $48,000 to $75,000.
  • New rear-entry converted minivans with manually operated fold-out ramps start in the low $40,000s.
  • You can find 3-year-old minivans with brand-new conversions starting in the low $30,000s.

For those with severe muscle weakness who want to drive their vehicle themselves, certified driver rehabilitation specialists (CDRS) can evaluate your needs at the Bridgewater, MA Mobility Center, and provide a prescription for adapted driving equipment and driver training.  (For more on this topic, contact us at 508-697-6006).

As you’ll discover, the scope of accessible vehicles is very broad indeed. Here’s a sampler of the myriad options currently available in the world of wheelchair-accessible vehicles and conversion equipment.

MinivansBraunAbility’s Chrysler Entervan features flexible floor plans
For easier boarding, the Entervan has an integrated “kneeling” system; while the door is opening, the rear suspension is lowered, reducing the slope of the ramp. To learn more, call 508-697-6006 .Because wheelchair transportation requirements can change over time, BraunAbility enables buyers to easily configure the floor plan of its Chrysler Entervan. Whether you want to be the driver or the front-seat passenger, removing the appropriate seat is literally a snap: Unlock the seat base and roll the entire seat out of the van.
VMI’s Honda Odyssey Northstar promotes easy entry

 

Wheelchair Van bridgewater, ma newenglandwheelchairvan.com boston

In the side-entry, lowered-floor Honda Odyssey Northstar conversion by VMI, a remote control triggers the PowerKneel System, lowering the vehicle and activating a power ramp that telescopes out from within the interior floor.

The lower ramp offers a gentler angle, and the unrestricted entry means better maneuverability once inside.

VMI also offers the Summit accessible Toyota van conversion featuring a power fold-out, heavy-duty ramp system with an anti-rattle mechanism. It also has the power kneeling feature. To learn more, call 508-697-6006

.2013 Toyota Sienna VMI Summit Silver VMi New England Wheelchair Van Boston

Consider a rear entry, says Jim Sanders
Although rear-entry vehicles don’t allow wheelchair users to park in the driver or front-passenger locations, Jim’s vision has always been to offer as many options possible including optional swiveling driver or front-passenger seat that may facilitate transferring from the wheelchair. (For more on the rear- versus side-entry question, see them at, the Bridgewater, MA Mobility Center.) To learn more, call 508-697-6006 .Believing that entering and exiting the van through the back sometimes avoids  barriers, Our viewpoint and vision has always been to offer as many options as is practical. Rear-entry, lowered-floor modification converts Chrysler, Ford, GM, Honda and Toyota minivans. An automatic remote-control option can even activate the ramp and door. This vision and technology of lowering the vehicle closer to the ground and the ramp to a more comfortable angle for wheelchair access.

 

‘A mobility concept vehicle’ starts out as a accessible ground up conversion; that can even go green
A car or minivan hybrid concept vehicle can be designed custom for you from the ground up with safety and accessibility as its top priority.

mobility concept vehicle mobility center bridgewater, ma boston strong

Rental vehicles New locations are being added, before your next trip or give us a call to learn more at 508-697-6006. It’s may even be possible to rent a Rollx wheelchair-accessible Dodge or Chrysler minivan at selected airports around the country. Someone even told us Thrifty Car Rental, Dollar Rent-a-Car or Payless Car Rental companies were thinking about offer accessible vans at airports like T.F. Green airport 2000 Post Rd, Warwick, RI 02886, Manchester–Boston Regional Airport 1 Airport Rd, Manchester, NH 03103, Logan International Airport 1 Harborside Dr, Boston, MA 02128
Cars and SUV’s Sport an attitude with a flair for the freedom to have different concept vehicles built with optional Motors depending on your needs a Scion xB might even work.If you’re just not the minivan type, consider the freedom of a concept vehicle, Want a custom sporty wheelchair-accessible vehicle? Click the remote: Simultaneously, the driver’s door swings open, the rear driver-side door gull-wings up and the ramp unfolds, ready for you to maneuver your wheelchair into driving position.

 

A similar conversion can be configured on the passenger side. Or if rear entry suits your needs, we offer you the freedom to pick a model that work best for you. Prices range from the low $30,000s for a manual rear-entry model to the low $500,000s for a one off concept vehicle with automatic side-entry. To learn more, call 508-697-6006
.

Hand controls and footless driving solutions
Systems from mechanical to servo actuated can be installed on most cars with automatic transmissions. The accelerator input can mounted within easy reach of the vehicle’s standard steering wheel, with the controls just inches away on either the right or left. Smoothly accelerate the vehicle remotely without use of your feel, designed to make hands only driving safe and easy.Depending on the make and model of your vehicle, installed prices start around $1,200, additionally we offer transportation of the vehicle to and from our mobility center. To learn more, call 508-697-6006
Buying used AMS pre-owned van might even be considered.Resale on them is typically incredibly low and these can be a ok deal if your able to bring it to a qualified mobility center to ensure it is in safe and working condition.

AMS pre-owned van bridgewater, ma newenglandwheelchairvan.com

There’s no getting around the fact that wheelchair vans are expensive; retrofitting new vans with accessibility equipment doesn’t come cheap. One way to cut costs is to buy a used van to avoid the  depreciation that happens when buying new.VMi New England offers many pre-owned vans outfitted with their new conversion equipment which can save buyers as much as $15,000 to $20,000.

Or, if you already have a fairly new Chrysler, Dodge or Volkswagen van, they may be able to convert it for you. Rear-entry conversions start at around $13,000, while side-entry conversions start at around $22,000, not including the price of the vehicle. To learn more, call 508-697-6006.

There are many grey market conversion vans available to you via the internet, ebay and private parties.

Many of these vehicles are being sold by direct marketing companies or individuals who bought them via the internet or ebay only to find out there were many problems with the van, it was unsafe and or wouldn’t work for there needs.

So in turn they are for sale again for what appears to be a great deal.

I wish i had a dollar for every customer who brought a “internet deal”, “used car dealer van”, “ebay wheelchair van deal” into our facility wanting to know what we could do to make it work for them.

Only to hear, i’m very sorry you didn’t visit with us before you purchased this van that your family member or friend in the wheelchair will not fit into the van.

Motorcycles

When it comes to motorcycles Jim Sanders has and will always promote accessible motorcycles and his personal belief that they offer the ultimate freedom when it comes to travel (unless it’s snowing in which case we need to talk about snowmobiles)

If you can operate a manual wheelchair, you may be able to drive a wheelchair-accessible motorcycle, says Sanders. Want a touring bike, a BMW, a KTM or how about a dirt bike. A remote-controlled drop-down ramp at the rear of the vehicle can be up fitted  allowing a rider to pull his or her chair into position, secure it with a push-button docking system, and ride off — no transferring necessary.

 

Bikes featuring a powerful BMW 1170 cc engine, a six-speed, two-button, thumb-operated gear shifter, and a rear-wheel-drive differential can be up fitted . Want a bike with a reverse gear for easier parking and maneuvering? To learn more, call 508-697-6006. If you can operate a manual wheelchair, you maybe able to drive a wheelchair-accessible motorcycle, says Sanders.

A remote-controlled drop-down ramp at the rear of the vehicle allows a rider to pull his or her chair into position, secure it with a push-button docking system, and ride off — no transferring necessary.

SUVs and trucks 

ryno wheelchair pick up truck bridgewater, ma boston, ma  newenglandwheelchairvan.com

A Stow-Away lift puts you inside

Bruno doesn’t sell wheelchair-accessible vehicles, but they do offer products that can be up fit  into vehicles.

Known for their home stair lifts and attachable vehicle lifts for transporting wheelchairs and scooters, they also make an add-on mechanism that may allow you to transfer you from a wheelchair up into the seat of a high-profile SUV or pickup.

 

Ryno no-transfer conversion for pickups 

Being a wheelchair user doesn’t mean you have to give up using a pickup truck. VMi New England has been offering pick up truck conversions for over 10 years allowing either driver-side or passenger-side entry into the cab of a GMC Sierra or Chevy Silverado without ever having to transfer out of the wheelchair.

When activated with the remote control, the door opens from the cab, then the lift platform deploys which rests flat on the ground. The wheelchair user backs onto the platform, which then elevates up and into the cab as the door slides back into the closed position.

To learn more, call 508-697-6006.

 

Logan International Airport
General Edward Lawrence Logan International Airport is located in the East Boston neighborhood of Boston, Massachusetts, US. It covers 2,384 acres, has six runways, and employs an estimated 16,000 people.Wikipedia
Code: BOS
Elevation: 19′ 0″ (5.80 m)
Address: 1 Harborside Dr, Boston, MA 02128
Phone: (800) 235-6426
Manchester–Boston Regional Airport
Manchester–Boston Regional Airport, commonly referred to simply as “Manchester Airport,” is a public airport located three miles south of the central business district of Manchester, New Hampshire on … Wikipedia
Code: MHT
Elevation: 266′ (81 m)
Address: 1 Airport Rd, Manchester, NH 03103
Phone: (603) 624-6539
T. F. Green Airport
T. F. Green Airport, also known as Theodore Francis Green Memorial State Airport, is a public airport located in Warwick, six miles south of Providence, in Kent County, Rhode Island, USA. Wikipedia
Code: PVD
Elevation: 55′ (17 m)
Address: 2000 Post Rd, Warwick, RI 02886
Phone: (888) 268-7222
Hours:

Open all.  –  See all
Conquest
conquest [ˈkɒnkwɛst ˈkɒŋ-]

n

1. the act or an instance of conquering or the state of having been conquered; victory
2. a person, thing, etc., that has been conquered or won
3. the act or art of gaining a person’s compliance, love, etc., by seduction or force of personality
4. a person, whose compliance, love, etc., has been won over by seduction or force of personality

 

 

What is amyotrophic lateral sclerosis?

What is amyotrophic lateral sclerosis?

what is amyotrophic lateral sclerosis

Amyotrophic lateral sclerosis (ALS), sometimes called Lou Gehrig’s disease, is a rapidly progressive, invariably fatal neurological disease that attacks the nerve cells (neurons) responsible for controlling voluntary muscles (muscle action we are able to control, such as those in the arms, legs, and face). The disease belongs to a group of disorders known as motor neuron diseases, which are characterized by the gradual degeneration and death of motor neurons.

Motor neurons are nerve cells located in the brain, brain stem, and spinal cord that serve as controlling units and vital communication links between the nervous system and the voluntary muscles of the body. Messages from motor neurons in the brain (called upper motor neurons) are transmitted to motor neurons in the spinal cord (called lower motor neurons) and from them to particular muscles. In ALS, both the upper motor neurons and the lower motor neurons degenerate or die, and stop sending messages to muscles. Unable to function, the muscles gradually weaken, waste away (atrophy), and have very fine twitches (called fasciculations). Eventually, the ability of the brain to start and control voluntary movement is lost.

ALS causes weakness with a wide range of disabilities (see section titled “What are the symptoms?”). Eventually, all muscles under voluntary control are affected, and individuals lose their strength and the ability to move their arms, legs, and body. When muscles in the diaphragm and chest wall fail, people lose the ability to breathe without ventilatory support. Most people with ALS die from respiratory failure, usually within 3 to 5 years from the onset of symptoms. However, about 10 percent of those with ALS survive for 10 or more years.

Although the disease usually does not impair a person’s mind or intelligence, several recent studies suggest that some persons with ALS may have depression or alterations in cognitive functions involving decision-making and memory.

ALS does not affect a person’s ability to see, smell, taste, hear, or recognize touch. Patients usually maintain control of eye muscles and bladder and bowel functions, although in the late stages of the disease most individuals will need help getting to and from the bathroom.

Who gets ALS?

As many as 20,000-30,000 people in the United States have ALS, and an estimated 5,000 people in the U.S. are diagnosed with the disease each year. ALS is one of the most common neuromuscular diseases worldwide, and people of all races and ethnic backgrounds are affected. ALS most commonly strikes people between 40 and 60 years of age, but younger and older people also can develop the disease. Men are affected more often than women.

In 90 to 95 percent of all ALS cases, the disease occurs apparently at random with no clearly associated risk factors. Individuals with this sporadic form of the disease do not have a family history of ALS, and their family members are not considered to be at increased risk for developing it.

About 5 to 10 percent of all ALS cases are inherited. The familial form of ALS usually results from a pattern of inheritance that requires only one parent to carry the gene responsible for the disease.  Mutations in more than a dozen genes have been found to cause familial ALS.

About one-third of all familial cases (and a small percentage of sporadic cases) result from a defect in a gene known as “chromosome 9 open reading frame 72,” or C9orf72. The function of this gene is still unknown. Another 20 percent of familial cases result from mutations in the gene that encodes the enzyme copper-zinc superoxide dismutase 1 (SOD1).

What are the symptoms?

The onset of ALS may be so subtle that the symptoms are overlooked. The earliest symptoms may include fasciculations, cramps, tight and stiff muscles (spasticity), muscle weakness affecting an arm or a leg, slurred and nasal speech, or difficulty chewing or swallowing. These general complaints then develop into more obvious weakness or atrophy that may cause a physician to suspect ALS.

The parts of the body showing early symptoms of ALS depend on which muscles in the body are affected. Many individuals first see the effects of the disease in a hand or arm as they experience difficulty with simple tasks requiring manual dexterity such as buttoning a shirt, writing, or turning a key in a lock. In other cases, symptoms initially affect one of the legs, and people experience awkwardness when walking or running or they notice that they are tripping or stumbling more often. When symptoms begin in the arms or legs, it is referred to as “limb onset” ALS.  Other individuals first notice speech problems, termed “bulbar onset” ALS.

Regardless of the part of the body first affected by the disease, muscle weakness and atrophy spread to other parts of the body as the disease progresses. Individuals may develop problems with moving, swallowing (dysphagia), and speaking or forming words (dysarthria). Symptoms of upper motor neuron involvement include spasticity and exaggerated reflexes (hyperreflexia) including an overactive gag reflex. An abnormal reflex commonly called Babinski’s sign (the large toe extends upward as the sole of the foot is stimulated in a certain way) also indicates upper motor neuron damage. Symptoms of lower motor neuron degeneration include muscle weakness and atrophy, muscle cramps, and fasciculations.

To be diagnosed with ALS, people must have signs and symptoms of both upper and lower motor neuron damage that cannot be attributed to other causes.

Although the sequence of emerging symptoms and the rate of disease progression vary from person to person, eventually individuals will not be able to stand or walk, get in or out of bed on their own, or use their hands and arms. Difficulty swallowing and chewing impair the person’s ability to eat normally and increase the risk of choking. Maintaining weight will then become a problem. Because cognitive abilities are relatively intact, people are aware of their progressive loss of function and may become anxious and depressed. A small percentage of individuals may experience problems with memory or decision-making, and there is growing evidence that some may even develop a form of dementia over time. Health care professionals need to explain the course of the disease and describe available treatment options so that people can make informed decisions in advance. In later stages of the disease, individuals have difficulty breathing as the muscles of the respiratory system weaken. They eventually lose the ability to breathe on their own and must depend on ventilatory support for survival. Affected individuals also face an increased risk of pneumonia during later stages of ALS.

How is ALS diagnosed?

No one test can provide a definitive diagnosis of ALS, although the presence of upper and lower motor neuron signs is strongly suggestive. Instead, the diagnosis of ALS is primarily based on the symptoms and signs the physician observes in the patient and a series of tests to rule out other diseases. Physicians obtain the individual’s full medical history and usually conduct a neurologic examination at regular intervals to assess whether symptoms such as muscle weakness, atrophy of muscles, hyperreflexia, and spasticity are getting progressively worse.

Since ALS symptoms in the early stages of the disease can be similar to those of a wide variety of other, more treatable diseases or disorders, appropriate tests must be conducted to exclude the possibility of other conditions. One of these tests is electromyography (EMG), a special recording technique that detects electrical activity in muscles. Certain EMG findings can support the diagnosis of ALS. Another common test is a nerve conduction study (NCS), which measures electrical energy by assessing the nerve’s ability to send a signal). Specific abnormalities in the NCS and EMG may suggest, for example, that the individual has a form of peripheral neuropathy (damage to peripheral nerves) or myopathy (muscle disease) rather than ALS. The physician may order magnetic resonance imaging (MRI), a noninvasive procedure that uses a magnetic field and radio waves to take detailed images of the brain and spinal cord. Standard MRI scans are normal in people with ALS. However, they can reveal evidence of other problems that may be causing the symptoms, such as a spinal cord tumor, a herniated disk in the neck that compresses the spinal cord, syringomyelia (a cyst in the spinal cord), or cervical spondylosis (abnormal wear affecting the spine in the neck).

Based on the person’s symptoms and findings from the examination and from these tests, the physician may order tests on blood and urine samples to eliminate the possibility of other diseases as well as routine laboratory tests. In some cases, for example, if a physician suspects that the individual may have a myopathy rather than ALS, a muscle biopsy may be performed.

Infectious diseases such as human immunodeficiency virus (HIV), human T-cell leukemia virus (HTLV), polio, West Nile virus, and Lyme disease can in some cases cause ALS-like symptoms. Neurological disorders such as multiple sclerosis, post-polio syndrome, multifocal motor neuropathy, and spinal muscular atrophy also can mimic certain facets of the disease and should be considered by physicians attempting to make a diagnosis. Fasciculations, the fine rippling movements in the muscle, and muscle cramps also occur in benign conditions.

Because of the prognosis carried by this diagnosis and the variety of diseases or disorders that can resemble ALS in the early stages of the disease, individuals may wish to obtain a second neurological opinion.

What causes ALS?

The cause of ALS is not known, and scientists do not yet know why ALS strikes some people and not others. An important step toward answering this question was made in 1993 when scientists supported by the National Institute of Neurological Disorders and Stroke (NINDS) discovered that mutations in the gene that produces the SOD1 enzyme were associated with some cases of familial ALS. Although it is still not clear how mutations in the SOD1 gene lead to motor neuron degeneration, there is increasing evidence that mutant SOD1 protein can become toxic.

Since then, over a dozen additional genetic mutations have been identified, many through NINDS-supported research, and each of these gene discoveries has provided new insights into possible mechanisms of ALS.

For example, the discovery of certain genetic mutations involved in ALS suggests that changes in the processing of RNA molecules (involved with functions including gene regulation and activity) may lead to ALS-related motor neuron degeneration. Other gene mutations implicate defects in protein recycling. And still others point to possible defects in the structure and shape of motor neurons, as well as increased susceptibility to environmental toxins. Overall, it is becoming increasingly clear that a number of cellular defects can lead to motor neuron degeneration in ALS.

Another research advance was made in 2011 when scientists found that a defect in the C9orf72 gene is not only present in a significant subset of ALS patients but also in some patients who suffer from a type of frontotemporal dementia (FTD). This observation provides evidence for genetic ties between these two neurodegenerative disorders. In fact, some researchers are proposing that ALS and some forms of FTD are related disorders with genetic, clinical, and pathological overlap.

In searching for the cause of ALS, researchers are also studying the role of environmental factors such as exposure to toxic or infectious agents, as well as physical trauma or behavioral and occupational factors. For example, studies of populations of military personnel who were deployed to the Gulf region during the 1991 war show that those veterans were more likely to develop ALS compared to military personnel who were not in the region.

Future research may show that many factors, including a genetic predisposition, are involved in the development of ALS.

How is ALS treated?

No cure has yet been found for ALS. However, the Food and Drug Administration (FDA) approved the first drug treatment for the disease—riluzole (Rilutek)—in 1995. Riluzole is believed to reduce damage to motor neurons by decreasing the release of glutamate. Clinical trials with ALS patients showed that riluzole prolongs survival by several months, mainly in those with difficulty swallowing. The drug also extends the time before an individual needs ventilation support. Riluzole does not reverse the damage already done to motor neurons, and persons taking the drug must be monitored for liver damage and other possible side effects. However, this first disease-specific therapy offers hope that the progression of ALS may one day be slowed by new medications or combinations of drugs.

Other treatments for ALS are designed to relieve symptoms and improve the quality of life for individuals with the disorder. This supportive care is best provided by multidisciplinary teams of health care professionals such as physicians; pharmacists; physical, occupational, and speech therapists; nutritionists; and social workers and home care and hospice nurses. Working with patients and caregivers, these teams can design an individualized plan of medical and physical therapy and provide special equipment aimed at keeping patients as mobile and comfortable as possible.

Physicians can prescribe medications to help reduce fatigue, ease muscle cramps, control spasticity, and reduce excess saliva and phlegm. Drugs also are available to help patients with pain, depression, sleep disturbances, and constipation. Pharmacists can give advice on the proper use of medications and monitor a patient’s prescriptions to avoid risks of drug interactions.

Physical therapy and special equipment can enhance an individual’s independence and safety throughout the course of ALS. Gentle, low-impact aerobic exercise such as walking, swimming, and stationary bicycling can strengthen unaffected muscles, improve cardiovascular health, and help patients fight fatigue and depression. Range of motion and stretching exercises can help prevent painful spasticity and shortening (contracture) of muscles. Physical therapists can recommend exercises that provide these benefits without overworking muscles. Occupational therapists can suggest devices such as ramps, braces, walkers, and wheelchairs that help individuals conserve energy and remain mobile.

People with ALS who have difficulty speaking may benefit from working with a speech therapist. These health professionals can teach individuals adaptive strategies such as techniques to help them speak louder and more clearly. As ALS progresses, speech therapists can help people develop ways for responding to yes-or-no questions with their eyes or by other nonverbal means and can recommend aids such as speech synthesizers and computer-based communication systems. These methods and devices help people communicate when they can no longer speak or produce vocal sounds.

Nutritional support is an important part of the care of people with ALS. Individuals and caregivers can learn from speech therapists and nutritionists how to plan and prepare numerous small meals throughout the day that provide enough calories, fiber, and fluid and how to avoid foods that are difficult to swallow. People may begin using suction devices to remove excess fluids or saliva and prevent choking. When individuals can no longer get enough nourishment from eating, doctors may advise inserting a feeding tube into the stomach. The use of a feeding tube also reduces the risk of choking and pneumonia that can result from inhaling liquids into the lungs. The tube is not painful and does not prevent individuals from eating food orally if they wish.

When the muscles that assist in breathing weaken, use of nocturnal ventilatory assistance (intermittent positive pressure ventilation [IPPV] or bilevel positive airway pressure [BIPAP]) may be used to aid breathing during sleep. Such devices artificially inflate the person’s lungs from various external sources that are applied directly to the face or body. Individuals with ALS will have breathing tests on a regular basis to determine when to start non-invasive ventilation (NIV).  When muscles are no longer able to maintain normal oxygen and carbon dioxide levels, these devices may be used full-time.

Individuals may eventually consider forms of mechanical ventilation (respirators) in which a machine inflates and deflates the lungs. To be effective, this may require a tube that passes from the nose or mouth to the windpipe (trachea) and for long-term use, an operation such as a tracheostomy, in which a plastic breathing tube is inserted directly in the patient’s windpipe through an opening in the neck. Patients and their families should consider several factors when deciding whether and when to use one of these options. Ventilation devices differ in their effect on the person’s quality of life and in cost. Although ventilation support can ease problems with breathing and prolong survival, it does not affect the progression of ALS. People need to be fully informed about these considerations and the long-term effects of life without movement before they make decisions about ventilation support.

Social workers and home care and hospice nurses help patients, families, and caregivers with the medical, emotional, and financial challenges of coping with ALS, particularly during the final stages of the disease. Respiratory therapists can help caregivers with tasks such as operating and maintaining respirators, and home care nurses are available not only to provide medical care but also to teach caregivers about giving tube feedings and moving patients to avoid painful skin problems and contractures. Home hospice nurses work in consultation with physicians to ensure proper medication and pain control.

What research is being done?

The National Institute of Neurological Disorders and Stroke, part of the National Institutes of Health, is the Federal Government’s leading supporter of biomedical research on ALS. The goals of this research are to find the cause or causes of ALS, understand the mechanisms involved in the progression of the disease, and develop effective treatments.

Scientists are seeking to understand the mechanisms that selectively trigger motor neurons to degenerate in ALS, and to find effective approaches to halt the processes leading to cell death. This work includes studies in animals to identify the molecular means by which ALS-causing gene mutations lead to the destruction of neurons. To this end, scientists have developed models of ALS in a variety of animal species, including fruit flies, zebrafish, and rodents. Initially, these genetically modified animal models focused on mutations in the SOD1 gene but more recently, models harboring other ALS-causing mutations also have been developed. Research in these models suggests that depending on the gene mutation, motor neuron death is caused by a variety of cellular defects, including in the processing of RNA molecules and recycling of proteins, as well as impaired energy metabolism, and hyperactivation of motor neurons. Increasing evidence also suggests that various types of glial support cells and inflammation cells of the nervous system play an important role in the disease.

Overall, the work in familial ALS is already leading to a greater understanding of the more common sporadic form of the disease. Because familial ALS is virtually indistinguishable from sporadic ALS clinically, some researchers believe that familial ALS genes may also be involved in sporadic ALS. For example, recent research has shown that the defect in the C9orf72 gene found in familial ALS is also present in a small percentage of sporadic ALS cases. Further, there is evidence that mutant SOD1 is present in spinal cord tissue in some sporadic cases of ALS.

Another active area of research is the development of innovative cell culture systems to serve as “patient-derived” model systems for ALS research. For example, scientists have developed ways of inducing skin cells from individuals with ALS into becoming pluripotent stem cells (cells that are capable of becoming all the different cell types of the body). In the case of ALS, researchers have been able to convert pluripotent stem cells derived from skin into becoming motor neurons and other cell types that may be involved in the disease. NINDS is supporting research on the development of pluripotent cell lines for a number of neurodegenerative diseases, including ALS.

Scientists are also working to develop biomarkers for ALS that could serve as tools for diagnosis, as markers of disease progression, or correlated with therapeutic targets. Such biomarkers can be molecules derived from a bodily fluid (such as spinal fluid), an imaging assay of the brain or spinal cord, or an electrophysiological measure of nerve and muscle ability to process an electrical signal.

Potential therapies for ALS are being investigated in a range of animal models, especially in rodent models. This work involves the testing of drug-like compounds, gene therapy approaches, antibodies and cell-based therapies. In addition, at any given time, a number of exploratory treatments are in clinical testing in ALS patients. Investigators are optimistic that these and other basic, translational, and clinical research studies will eventually lead to new and more effective treatments for ALS.

How Can I Help Research?

The NINDS and the Centers of Disease Control and Prevention/ Agency for Toxic Substances and Disease Registry (CDC/ATSDR) are committed to studies of disease patterns or risk factors among persons with ALS in order to better understand the causes of ALS, the mechanisms involved in the progression of the disease, and to develop effective treatments. The National ALS Registry, a program to collect, manage, and analyze data about persons with ALS, was launched in October 2010 and is actively enrolling individuals with the disease. The Registry includes data from national databases as well as de-identified information provided by persons with ALS. All collected information is kept confidential. Persons living with ALS who choose to participate can add their information to the Registry by visitingwww.cdc.gov/als.

Clinical trials offer hope for many people and an opportunity to help researchers find better ways to safely detect, treat, or prevent disease. Many neurological disorders don’t have good treatment options. By participating in a clinical trial, individuals with an illness or disease can greatly affect their life and those of others affected by a neurological disorder.  For information about finding and participating in clinical trials, visit NIH Clinical Research Trials and You atwww.nih.gov/health/clinicaltrials. Use the search terms “amyotrophic lateral sclerosis” or “ALS AND (your state)” to locate trials in your area.

The NINDS contributes to the support of the Human Brain and Spinal Fluid Resource Center in Los Angeles. This bank supplies investigators around the world with tissue from patients with neurological and other disorders. Tissue from individuals with ALS is needed to enable scientists to study this disorder more intensely. Prospective donors may contact:

Human Brain and Spinal Fluid Resource Center
Neurology Research
W. Los Angeles Healthcare Center
11301 Wilshire Blvd. (127A)
Building 212, Room 16
Los Angeles, CA 90073
310-268-3536
www.brainbank.ucla.edu

 Where can I get more information?

For more information on neurological disorders or research programs funded by the National Institute of Neurological Disorders and Stroke, contact the Institute’s Brain Resources and Information Network (BRAIN) at:

BRAIN
P.O. Box 5801
Bethesda, MD 20824
(800) 352-9424
http://www.ninds.nih.gov

Information also is available from the following organizations:

ALS Association
1275 K Street, N.W.
Suite 1050
Washington, DC   20005
advocacy@alsa-national.org
http://www.alsa.org External link
Tel: 202-407-8580
Fax: 202-289-6801
Les Turner ALS Foundation
5550 W. Touhy Avenue
Suite 302
Skokie, IL   60077-3254
info@lesturnerals.org
http://www.lesturnerals.org External link
Tel: 888-ALS-1107 847-679-3311
Fax: 847-679-9109
Muscular Dystrophy Association
3300 East Sunrise Drive
Tucson, AZ   85718-3208
mda@mdausa.org
http://www.mda.org External link
Tel: 520-529-2000 800-572-1717
Fax: 520-529-5300
Project ALS
3960 Broadway
Suite 420
New York, NY   10032
info@projectals.org
http://www.projectals.org External link
Tel: 212-420-7382 800-603-0270
Fax: 212-420-7387
ALS Therapy Development Institute
300 Technology Square
Suite 400
Cambridge, MA   02139
info@als.net
http://www.als.net External link
Tel: 617-441-7200
Fax: 617-441-7299
Prize4Life
P.O. Box 425783
Cambridge, MA   02142
contact@prize4life.org
http://www.prize4life.org External link
Tel: 617-500-7527

Student Engineers Build Feeding Arm For Hingham ALS Patient

VMiNewEngland.com

Pimkin needed help eating and he asked UMass Lowell’s engineering students to invent a machine that could feed him. He heard about the group of students through someone online and then successfully approached them.
“They interviewed me and decided that they wanted to make me the subject of their project,” he told Patch through email.  “Before they made the arm, they came to my home.  Took measurements and then worked on the machine.  It took about six months or so.   During this time, we stayed in contact sharing ideas about how the device would be most useful.”
The students built a  “feeding arm”  which Pipkin uses everyday and has helped him become more independent.
“I’ve lost so much of my independence with this terrible disease, Pipkin said.   “So every little bit of independence I can get back, is a very big deal for me.”
The mechanical device picks up food and delivers it to Pipkin and helps him improve his self-care and his daily needs.  The ALS patient says he uses the arm to eat foods like yogurt, oatmeal and grits but has a hard time eating larger foods.
Pipkin was also very gracious for the students’ work and hopes more feeding arms will be created in the future for ALS patients.
“I thought the students seemed dedicated and truly wanted to help me,” he said. “They seemed to really care that the arm would work and function properly.”
Pipkin has been battling ALS for eight years, which is rare – usually the deadly disease claims its victims within 4-6 years.
Before being diagnosed,  Pipkin was living in Manhattan and pursuing a successful career in marketing global fragrance brands for companies such as Elizabeth Arden, Calvin Klein and Estee Lauder.   Pipkin’s last project was spearheading the successful launch of Mariah Carey’s first fragrance “M” in 2007.
Thanks to his brave efforts, Pipkin is being named the official chairperson of a new campaign by the Needham-based ALS Therapy Alliance to raise awareness, money and hope for people fighting ALS.
“It is important to contribute to ALS research because there are people like me, every day, fighting to stay healthy in the hopes that there will be a breakthrough,” says Pipkin. “Doctors told me that I would not live more than a few year; eight years later, I am still here and I’m in relatively stable health. I want to encourage people to keep fighting ALS,”
“We had our stressful moments,” said the Fitchburg 22-year-old. “But we worked it out.”

2013 Swing for ALS Charity Golf Tournament Pinehills Golf Club, Plymouth, MA

2013 Swing for ALS Charity Golf Tournament Pinehills Golf Club, Plymouth, MA

Swing__pine_hills__chapter_logo swing

JUNE 11th, 2013

For more info on the SWING FOR ALS – click here!

http://webma.alsa.org/site/Calendar?id=158321&view=Detail

 

Take a swing at ALS at the fourth Annual Swing for ALS Golf Tournament!  Support the fight against Lou Gehrig’s Disease at one of Massachusetts’ finest golf courses —Pinehills Golf Club, Plymouth, MA.  The day will begin with golfer registration at 10:30 AM followed by a shot gun start at 11:00 AM.  Our evening program will begin around 5:00 PM with dinner and an exciting live/silent auction that you won’t want to miss!

 

Date: Tuesday, June 11, 2013

Time: 11:00 AM – 8:00 PM

Address: 54 Clubhouse Drive

Plymouth, MA 02360

 

Not a golfer? Dinner-only tickets are available! Just click Buy Tickets.

 

For more information on tickets and sponsorship opportunities, or to register over the phone, please contact Susan Adler at susan.adler@als-ma.org, or call The ALS Association Massachusetts Chapter at 781-255-8884 (ext. 234) or 888-CURE-ALS (Toll Free).

HELP FIND A CURE FOR Lou Gehrig’s Disease UMASS ALS CHAMPION FUND

The Champion Fund aims to help Dr. Brown and his colleagues pursue ALS research leads and breakthroughs right now that might otherwise take years to attract funding from traditional sources. As a result, this Fund will make researchers at UMMS better prepared to “seize the moment” when highly promising ALS discoveries are made.

Dr. Brown is widely recognized as a pioneer in neurodegenerative disease research and for 30 years has dedicated his career to unlocking the secrets of ALS, a degenerative disorder that causes progressive muscle weakness, leading to paralysis and eventually death. There is currently no treatment to stop or reverse ALS. Brown has been a leading visionary for ALS treatment and part of nearly every fundamental ALS breakthrough to-date, including the identification of mutations in a gene that is responsible for the rare, familial form of the disease. Brown’s work has opened a window into ALS that has drastically changed the research landscape and provided patients and loved ones touched by ALS with something very rare: hope.

The Champion Fund aims to extend and supplement the already great fundraising initiatives benefiting UMMS. Dr. Brown and team has been fortunate to receive support from a diversity of groups, including the Massachusetts-based Angel Fund and national partner CVS Pharmacy, both of which have been raising money for UMMS and acting as champions in the fight against ALS for more than 10 years. The Champion Fund will complement and extend those funding sources to augment the overall effort..

Now is the time. There is hope. But, victories are a team effort. Join us – become a champion and help fight back against ALS.

View the list of the campaign’s Honorary Co-chairs.

How to adapt your new or pre-owned vehicle to meet your needs after a stroke

How to adapt your pre-owned vehicle to meet your needs after a stroke

Easy Car Makeovers for Adaptive Driving

 CAN I DRIVE AFTER A STROKE newenglandwheelchairvan.com

Driving after a stroke is often a major concern for survivor’s and their loved ones. It prompts many questions about ability, safety and vehicle options. Often times, the physical disadvantages that result from stroke can compromise a survivor’s ability to operate their vehicle.

Advances in the vehicle modification industry have introduced new driving controls that are giving independence back to stroke survivors that want to drive. They allow them to get back behind the wheel in their own vehicle to go where they want to go, when they want to go.

Innovative vehicle modifications such as hand controls, left-foot accelerators, lifts and mobility seating can transform your personal vehicle into a vehicle that give you more freedom.

Mobility equipment dealers strive to remain at the forefront of the vehicle modification industry by providing cutting-edge technology and a full selection of adaptable equipment for your pre-owned vehicle.

Hand Controls For Stroke Survivors with Limited Use of their Feet

Automotive Innovations is New England’s  #1 hand control installation facility  manufacturer of hand controls and driving aids for the disabled. Hand control systems are specifically designed to give drivers the benefit of controlling a vehicle with both hands on the wheel making for a safer, smoother driving experience.

Unlike other manual and or servo hand control installers in Massachusetts, Rhode Island, Connecticut, Vermont, New Hampshire and Maine, we have the ability to offer a custom fitment to your vehicle and you, for everything from a Fiat 500 to a Lamborghini Aventador no one else has the master craftsman, machining equipment and facility capable of performing a custom installation the way we can.

Push Rock hand controls have a handle in a vertical position; accelerating by rocking back in an arching motion using the fingers and/or the palm. There are several additional options to choose from:

  • Spinner knob: Attached to the steering wheel to allow controlled steering with use of one hand.
  • Single Pin: As an alternative to the spinner knob, this hand control was designed for clients that cannot open their hand fully.
  • Tri Pin: Great for an independent driver. It requires minimal gripping strength and/or reduced wrist stability.
  • V-Grip: This attachment is intended for drivers with moderate gripping strength.
  • Steering Wheel Extension: This device is individually customizable, so you can pick a diameter and height that best suits your needs. The easily removable device is completely compatible with any OEM steering wheel.

Servo electronic mobility controls offers driving control products that are safe and provide piece of mind every time you are on the road.

Servo Steering Servo gas brake

  • Lever  A gas/brake input with adjustable levels of force and travel from the full gas to the full brake position. It is designed for customers that have a wider range of motion and a larger effort level.
  • One handed steering and gas brake  A input that you can steer that is available in a two-axis configuration for gas/brake and steering It has a adjustable range of motion and very low levels  of force to operate. It is designed and custom build for each customers specific range of motion and abilities.
  • Wheel  A steering input that can be adjusted to less than 2 oz of force at the proper orthotic position of 3 3/8” from center. It is also able to be adaptable for customers that have a wider range of motion.

Left-foot Accelerator

Automotive Innovations offers the best left foot gas pedals with unmatched installations.  Left-foot accelerator are designed to offer a left foot gas pedal which acts exactly like your vehicle’s existing gas pedal. Our Left foot gas pedals are removable with features like a quick-release base so the entire assembly can be removed and re-installed quickly and easily.

Lifts for Stroke Survivors that use Wheelchairs or Walkers

Automotive Innovations can offer more solutions for the transportation of your mobility device than any other dealership in New England.

” Its worth the drive, I live in the western part of Massachusetts and will never trust my van with anyone other than Automotive Innovations. They have been taking care of me and my vans since 1996. When a company comes through for you time and time again whats that worth? For me it’s priceless and the drive is irrelevant.”

Chris P Whately, MA

  • Scooter & Wheelchair Lifts while are not always practical they do work in all types of vehicles. These fold-down wheelchair and scooter lifts make lifting and storing your manual folding wheelchair or scooter possible.

Mobility Seating

The mobility transfer seat is an innovative system for lower vehicles which can provide easer  access to an automotive seat. The seat power rotates out over the doorsill, bridging the gap for a safe transfer onto the seat. These seats are not always practical for every type of vehicle

Our goal is to match your lifestyle and your vehicle with equipment that will deliver independence.

Finding a Dealer That’s Up to Standards

Hand controls, left-foot accelerator, lifts and mobility seating offers opportunities for the stroke survivor to regain their mobility freedom in their pre-owned vehicle. You have just found the best mobility dealer in all of New England that offers a ever evolving selection of adaptable equipment.

It is important to select a reputable dealer to provide the adaptable equipment and installation for your pre-owned vehicle.

  1. Are they members of the National Mobility Equipment Dealers Association (NMEDA) or another organization that has vehicle conversion standards?
  2. Are they Quality Assurance Program (QAP) certified?
  3. Do they provide ongoing service and maintenance?
  4. Do they provide 24/7 emergency service?
  5. Do they provide training on the adaptable equipment?
  6. Can the equipment be transferred to a new vehicle in the future?

Adapting pre-owned vehicles provides stroke survivors with mobility freedom in the vehicle they love and are familiar with.

By: Jim Sanders, VMi New England

May Is ALS Awareness Month : Speak Up Now To Give Hope

May is ALS Awareness month : speak up Now to Give Hope

ALS, also known as Lou Gehrig’s Disease, is 100% fatal and has few treatments to improve the quality of life. We are committed to helping more people understand the impact that this devastating disease has on individuals and families nationwide. During ALS Awareness Month, we ask that you join us: speak up now to give hope.

Tell Your Story · Sign up · Advocate

May us ALS Awareness month: Speak up Now to Give Hope

What is ALS?
Amyotrophic lateral sclerosis (ALS), often referred to as “Lou Gehrig’s Disease,” is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.A-myo-trophic comes from the Greek language. “A” means no or negative. “Myo” refers to muscle, and “Trophic” means nourishment–”No muscle nourishment.” When a muscle has no nourishment, it “atrophies” or wastes away. “Lateral” identifies the areas in a person’s spinal cord where portions of the nerve cells that signal and control the muscles are located. As this area degenerates it leads to scarring or hardening (“sclerosis”) in the region.

As motor neurons degenerate, they can no longer send impulses to the muscle fibers that normally result in muscle movement. Early symptoms of ALS often include increasing muscle weakness, especially involving the arms and legs, speech, swallowing or breathing. When muscles no longer receive the messages from the motor neurons that they require to function, the muscles begin to atrophy (become smaller). Limbs begin to look “thinner” as muscle tissue atrophies.

Forms of ALS
Three classifications of ALS have been described:

  • Sporadic: The most common form of ALS in the United States – 90 to 95% of all cases.
  • Familial: Occurring more than once in a family lineage (genetic dominant inheritance) accounts for a very small number of cases in the United States – 5 to 10% of all cases.
  • Guamanian: An extremely high incidence of ALS was observed in Guam and the Trust Territories of the Pacific in the 1950’s.

The most common form of ALS in the United States is “sporadic” ALS. It may affect anyone, anywhere. “Familial” ALS (FALS) means the disease is inherited. Only about 5 to 10% of all ALS patients appear to have genetic or inherited form of ALS. In those families, there is a 50% chance each offspring will inherit the gene mutation and may develop the disease.

Who Gets ALS?
ALS is a disorder that affects the function of nerves and muscles. Based on U.S. population studies, a little over 5,600 people in the U.S. are diagnosed with ALS each year. (That’s 15 new cases a day.) It is estimated that as many as 30,000 Americans have the disease at any given time. According to the ALS CARE Database, 60% of the people with ALS in the Database are men and 93% of patients in the Database are Caucasian.

Most people who develop ALS are between the ages of 40 and 70, with an average age of 55 at the time of diagnosis. However, cases of the disease do occur in persons in their twenties and thirties. Generally though, ALS occurs in greater percentages as men and women grow older. ALS is 20% more common in men than in women. However with increasing age, the incidence of ALS is more equal between men and women.

There are several research studies – past and present – investigating possible risk factors that may be associated with ALS.  More work is needed to conclusively determine what genetics and/or environment factors contribute to developing ALS. It is known, however, that military veterans, particularly those deployed during the Gulf War, are approximately twice as likely to develop ALS.
Half of all people affected with ALS live at least three or more years after diagnosis. Twenty percent live five years or more; up to ten percent will live more than ten years.

There is some evidence that people with ALS are living longer, at least partially due to clinical management interventions, riluzole and possibly other compounds and drugs under investigation.

Diagnosing ALS
ALS is a very difficult disease to diagnose. To date, there is no one test or procedure to ultimately establish the diagnosis of ALS. It is through a clinical examination and series of diagnostic tests, often ruling out other diseases that mimic ALS, that a diagnosis can be established. A comprehensive diagnostic workup includes most, if not all, of the following procedures:

  • electrodiagnostic tests including electomyography (EMG) and nerve conduction velocity (NCV)
  • blood and urine studies including high resolution serum protein electrophoresis, thyroid and parathyroid hormone levels and 24-hour urine collection for heavy metals
  • spinal tap
  • x-rays, including magnetic resonance imaging (MRI)
  • myelogram of cervical spine
  • muscle and/or nerve biopsy
  • thorough neurological examination

For more information on the importance of a second opinion, click here.

These tests are done at the discretion of the physician, usually based on the results of other diagnostic tests and the physical examination. There are several diseases that have some of the same symptoms as ALS and most of these conditions are treatable. It is for this reason that The ALS Association recommends that a person diagnosed with ALS seek a second opinion from an ALS “expert” – someone who diagnoses and treats many ALS patients and has training in this medial specialty. The ALS Association maintains a list of recognized experts in the field of ALS. See ALS Association Certified Centers of ExcellenceSM, ALS Clinics and contact your local ALS Association Chapter or the National Office.

Symptoms
Initial Symptoms of the Disease
At the onset of ALS the symptoms may be so slight that they are frequently overlooked. With regard to the appearance of symptoms and the progression of the illness, the course of the disease may include the following:

  • muscle weakness in one or more of the following: hands, arms, legs or the muscles of speech, swallowing or breathing
  • twitching (fasciculation) and cramping of muscles, especially those in the hands and feet
  • impairment of the use of the arms and legs
  • “thick speech” and difficulty in projecting the voice
  • in more advanced stages, shortness of breath, difficulty in breathing and swallowing

The initial symptoms of ALS can be quite varied in different people. One person may experience tripping over carpet edges, another person may have trouble lifting and a third person’s early symptom may be slurred speech. The rate at which ALS progresses can be quite variable from one person to another. Although the mean survival time with ALS is three to five years, many people live five, ten or more years. In a small number of people, ALS is known to remit or halt its progression, though there is no scientific understanding as to how and why this happens. Symptoms can begin in the muscles of speech, swallowing or in the hands, arms, legs or feet. Not all people with ALS experience the same symptoms or the same sequences or patterns of progression. But, progressive muscle weakness and paralysis are universally experienced.

Muscle weakness is a hallmark initial sign in ALS, occurring in approximately 60% of patients. Early symptoms vary with each individual, but usually include tripping, dropping things, abnormal fatigue of the arms and/or legs, slurred speech, muscle cramps and twitches and/or uncontrollable periods of laughing or crying.

The hands and feet may be affected first, causing difficulty in lifting, walking or using the hands for the activities of daily living such as dressing, washing and buttoning clothes.

As the weakening and paralysis continue to spread to the muscles of the trunk of the body the disease, eventually affects speech, swallowing, chewing and breathing. When the breathing muscles become affected, ultimately, the patient will need permanent ventilatory support in order to survive.

Since ALS attacks only motor neurons, the sense of sight, touch, hearing, taste and smell are not affected. For many people, muscles of the eyes and bladder are generally not affected.

Facts You Should Know

  • ALS is not contagious.
  • It is estimated that ALS is responsible for nearly two deaths per hundred thousand population annually.
  • Approximately 5,600 people in the U.S. are diagnosed with ALS each year. The incidence of ALS is two per 100,000 people, and it is estimated that as many as 30,000 Americans may have the disease at any given time.
  • Although the life expectancy of an ALS patient averages about two to five years from the time of diagnosis, this disease is variable and many people live with quality for five years and more.  More than half of all patients live more than three years after diagnosis.
  • About twenty percent of people with ALS live five years or more and up to ten percent will survive more than ten years and five percent will live 20 years. There are people in whom ALS has stopped progressing and a small number of people in whom the symptoms of ALS reversed.
  • ALS occurs throughout the world with no racial, ethnic or socioeconomic boundaries.
  • ALS can strike anyone.
  • The onset of ALS is insidious with muscle weakness or stiffness as early symptoms. Progression of weakness, wasting and paralysis of the muscles of the limbs and trunk as well as those that control vital functions such as speech, swallowing and later breathing generally follows.
  • There can be significant costs for medical care, equipment and home health caregiving later in the disease.  It is important to be knowledgeable about your health plan coverage and other programs for which your may be eligible, including SSA, Medicare, Medical and Veteran Affairs benefits.
  • Riluzole, the first treatment to alter the course of ALS, was approved by the FDA in late 1995. This antiglutamate drug was shown scientifically to prolong the life of persons with ALS by at least a few months. More recent studies suggest Riluzole slows the progress of ALS, allowing the patient more time in the higher functioning states when their function is less affected by ALS. Click here for more information on the drug. Many private health plans cover the cost of Riluzole. Further information on Riluzole coverage through Medicare Prescription Drug Benefit can be found in the Advocacy pages of this website.

Reports from three separate patient databases described long range experience with Riluzole. All three reports suggest a trend of increasing survival with Riluzole over time. More studies that are double blind and controlled are needed to confirm these database observations. The trend appears to indicate that longer periods of time than those used in the Riluzole clinical trials may be needed to see the long-term survival advantage of the drug. An interesting observation was that despite the fact that the Irish government provides Riluzole free of charge to people in Ireland with ALS, only two-thirds of the patients registered in the Ireland national ALS database reported taking Riluzole.