Category Archives: 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.

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’

VETERANS BENEFITS: OPERATION INDEPENDENCE MOBILITY VEHICLE PROGRAM

VETERANS BENEFITS
Come to VMi New England Mobility Center and learn more about the Paralyzed Veterans of America and Operation Independence
veteran mobility equipment VMi New England
OPERATION INDEPENDENCE
VMI is the premier manufacturer of wheelchair accessible vans. At the VMi New England Mobility Center we are experts in mobility assessment and customization. We have combined our knowledge with the Veterans across America to increase awareness with disabled veterans regarding VA vehicle benefits, and help them get the benefits they have earned while serving our country:
•  You may be entitled to VA funding for adaptive automotive equipment
•  In many cases, you may also be entitled to a one-time auto allowance for the vehicle itself.Operation Independence helps veterans get into their first wheelchair accessible van. Whether you are entitled to the auto allowance grant or will be personally funding your first wheelchair accessible van, the VMi New England Mobility Center will give you a $1,000 rebate towards the van we are converting for you.VETERAN MOBILITY BENEFITS
To be eligible for financial assistance in purchasing a new or used automobile (or other conveyance), a Veteran or serviceperson must have acquired one of the following disabilities as a result of injury or disease incurred or aggravated during active military service, or as a result of medical treatment or examination, vocations rehabilitation, or compensated work therapy provided by the Department of Veterans Affairs (VA) (38 U.S.C. 1151):•  Loss, or permanent loss of use, of one or both feet
•  Loss, or permanent loss of use, of one or both hands, or
•  Permanent impairment of vision in both eyes with a
•  Central visual acuity of 20/200 or less in the better eye with corrective glasses, or
•  Central visual acuity of more than 20/200 if there is a field defect in which the peripheral field has contracted to such an extent that the widest diameter of visual field has an angular distance no greater than 20 degrees in the better eye
Even if you are not entitled to the auto allowance grant (21-4502), you may still qualify for an adaptive automotive equipment grant (10-1394) for a wheelchair accessible conversion on a vehicle which you would fund through alternative means. .
“FEDERAL BENEFITS FOR VETERANS, DEPENDENTS AND SURVIVORS”
veteran mobility equipment

The VMi New England Mobility Center values our veterans and the services they provided to protect our freedoms. We see first hand the impact of the sacrifices they have made defending our country. As a result we have put together information that will make it easier for them to find the benefits and support they need.

Key areas of benefits are focused on here:
1. Service Connected Disabilities
2. VA4502 Grant
3. Automobile Adaptive Equipment (AAE)

Service-Connected Disabilities
Disability Compensation Disability compensation is a monetary benefit paid to veterans who are disabled by an injury or illness that was incurred or aggravated during active military service. These disabilities are considered to be service-connected.
Click here to review the Federal Benefits for Veterans
http://www.va.gov/opa/publications/benefits_book/benefits_chap02.asp

VA 4502 GRANT
Can a Veteran Receive Financial Assistance From VA to Purchase an Automobile?
Yes. Financial assistance, in the form of a grant, is available to purchase a new or used automobile (or other conveyance) to accommodate a veteran or service member with certain disabilities that resulted from an injury or disease incurred or aggravated during active military service. The grant may also be paid, if disabilities are a result of medical treatment, examination, vocational rehabilitation, or compensated work therapy provided by the Department of Veterans Affairs (VA)

 

The grant is paid directly to the seller of the automobile for the total price (up to $18,900) of the automobile. The veteran or service member may only receive the automobile grant once in his/her lifetime.
Effective October 1, 2011

Section 804- Enhancement of automobile assistance allowance for veterans would increase automobile assistance from $11,000 to $18,900, effective October 1, 2011

Click here to see a pdf for more details Automobile and Special Adaptive Equipment Grants Click here to review the Federal Form VBA-21-4502
http://www.vba.va.gov/pubs/forms/VBA-21-4502-ARE.pdf

Automobile Adaptive Equipment (AAE)
The Automobile Adaptive Equipment (AAE) program permits physically challenged persons to enter, exit, and/or operate a motor vehicle or other conveyance.

Veterans are trained, through the VA Driver’s Rehabilitation Program, how to safely operate their vehicle on our nation’s roadways.

The VA also provides necessary equipment such as platform wheelchair lifts, UVLs (under vehicle lifts), power door openers, lowered floors/raised roofs, raised doors, hand controls, left foot gas pedals, reduced effort and zero effort steering and braking, and digital driving systems.

Additionally, VA’s program provides reimbursements for standard equipment including, but not limited to, power steering, power brakes, power windows, power seats, and other special equipment necessary for the safe operation of an approved vehicle. For more information click on the link below.
http://www.prosthetics.va.gov/AAE.asp

DEPARTMENT OF VETERANS AFFAIRS

“Automobile and Special Adaptive Equipment Grants”

Can a Veteran Receive Financial Assistance From VA to Purchase an Automobile?
Yes. Financial assistance, in the form of a grant, is available to purchase a new or used automobile (or other conveyance) to accommodate a veteran or servicemember with certain disabilities that resulted from an injury or disease incurred or aggravated during active military service. The grant may also be paid, if disabilities are a result of medical treatment, examination, vocational rehabilitation, or compensated work therapy provided by the Department of Veterans Affairs (VA).

The grant is paid directly to the seller of the automobile for the total price (up to $11,000) of the automobile. The veteran or servicemember may only receive the automobile grant once in his/her lifetime.

What Disabilities Must You Have to Qualify for the Automobile Grant?
A veteran or servicemember must have one of the following disabilities to qualify for the automobile grant:

  •  loss, or permanent loss of use, of one or both feet
•  loss, or permanent loss of use, of one or both hands, or
•  permanent impairment of vision in both eyes to a certain degree

Does VA Pay to Adapt a Vehicle?
Yes. Those qualified for the automobile grant, and veterans or servicemembers with ankylosis (immobility of the joint) of one or both knees or hips resulting from an injury or disease incurred or aggravated by active military service may also qualify for the adaptive equipment grant.

Adaptive equipment includes, but is not limited to, power steering, power brakes, power windows, power seats, and special equipment necessary to assist the eligible person into and out of the vehicle. Contact should be made with your local VA medical center’s Prosthetic Department prior to purchasing any equipment.

The adaptive equipment grant may be paid more than once, and it may be paid to either the seller or the veteran.

How Can I Apply for an Automobile and/or Special Adaptive Equipment Grant?
You can apply for the automobile and/or the special adaptive equipment grant by completing VA Form 21-4502, Application for Automobile or Other Conveyance and Adaptive Equipment and submitting it to your local VA regional office. The instructions on the VA Form 21-4502 contain a list of adaptive equipment that has been pre-approved for particular disabilities.

Note: After you complete and submit Section I of the application, VA will complete Section II and return the original to you. You are responsible for obtaining the invoice from the seller, updating Section III, and submitting the form to your local VA regional office for payment.

If you are entitled to adaptive equipment only (i.e., service connected for ankylosis of knees or hips) you should complete VA Form 10-1394, Application for Adaptive Equipment – Motor Vehicle and submit it to your local VA medical center. Additionally, VA Form 10-1394 should be completed for approval of equipment not specified on the VA Form 21-4502.

How To Really Move On When You Can No Longer Walk

There are a lot of nightmare scenarios no one wants to personally experience. One is getting a phone call that someone you love is hurt and another — permanently ending up in a wheelchair. Many people say they’d rather be dead if this happened to them, but oh how things change when you actually find yourself in this situation.

Keep Newey Mobile - VMi New England Wheelchair Vans

Simply put people don’t want to die, so they deal with it and move on, but it’s never that easy.  And for some even, they’re never able to, so forever languishing in a living hell.

To truly see how it is possible to move on after becoming a wheelchair-user and be enlightened, read on for seven awesome insights.

Accept that you must reinvent yourself.

One of the first things to know when you become a wheelchair-user is that you are no longer who you were before.  If your body is different after going through such a dramatic injury. A lot of people fight against this, wanting to hold onto their previous able-bodied self, but the fact is they will never be that person again.

Instead of desperately holding onto someone you once were, embrace this as an opportunity to reinvent yourself.  If you no longer do tree work, get that engineering degree you always wanted and finally feed that part of your brain from here on out.  A serious bodily injury can really open new doors.

Find out how to still use your body as much as possible.

It can be so difficult no longer being able to use your body like before, but don’t give up on moving your body just because you can’t use it 100 percent.  Instead, push yourself as much as possible.  If you can’t move your legs, you can try electrical stimulation to the legs.  If you can’t transfer yourself but you get really close, try for years until you finally get it.  Never give up on your body’s strength and pushing it (safely of course).  Even if you move your body involuntarily, knowing you’re still utilizing all four limbs in some way is a must for the soul long-term.

You should also be working out on a regular basis. Serious cardio and strength training is a must when you use a wheelchair since getting your heart rate can be a great way to boost endorphins in the brain.  When you’re not getting the cardio you would otherwise get from regular able-bodied activities, like walking all the time, you must find another way to get it. It’s a huge must.

Develop a negative thinking coping mechanism.

It can be almost too easy getting into a negative train of thought when things aren’t going well as a wheelchair-user.  The tendency to blame the wheelchair for all of your problems is almost too easy.  Whenever you find yourself angry because you need a wheelchair, try to click your mind into a positive place; a place you’ve created just for this.  Maybe it’s a happy memory or a place you absolutely love.

Take on the “survivor success” mentality. 

I love this one. Never forget that you are a survivor for living life sitting-down.  This is an existence that challenges a human both mentally and physically.  Whenever you feel empty inside because you can’t use your god-given legs, remind yourself that you are a  survivor in the exact sense, and let that feed your ego if you must.  Not many people can do what you do and do it so well. Yes, you do rock.

Learn to love yourself.

It can be easy being jealous of everyone that can walk when you can’t, but if you learn to love yourself completely, you’ll be a lot happier.

If you have a hard time finding things you absolutely love about yourself, make a list and ask friends and family their input.  You’ll be surprised at what you hear and chances are it will make you feel awesome.

Appreciate your unique perspective.

It can take several years to get to the mindset of enjoying the interesting perspective of  living life sitting down —  the people we meet, the lessons we’ve learned through our struggles, the way it helps us look at life differently, perhaps even better.  When you have a body that doesn’t respond like it once did, you have no choice but to look at the world differently. This without question, sharpens the mind.

Be grateful for what you still have.

Each moment you’re able to breathe is a gift whether you believe it or not, and when you use a wheelchair this is even more true since so many of us have had near death experiences. It may sound cliche, but yes, do count your blessings. 

Life is too short to wish for unicorns and golden tickets in chocolate bars. The here and the now is all we got. Enjoy your ice cream before it melts.

How have you been able to move on after becoming a wheelchair-user?