Monday, May 20, 2013

ALS (Amyotrophic Lateral Sclerosis): Letter From a Man with ALS

A Random Letter From a Victim of ALS

By: Fat Lester

The following are the contents of an email that a friend and colleague passed along to me. He is raising money for the Muscular Dystrophy Association (MDA) to help find a cure for ALS (Amyotrophic Lateral Sclerosis).

Out of nowhere (he does not know this man - hence the anonymity - nor does he know how the man obtained his top-secret email address. That said, he found the letter quite the motivational tool to summon his best efforts in attempting to solicit donations from family, friends and social media contacts, and as one of those whom he asked to help spread his message, I was given his permission to publish the contents of the letter he received from an actual ALS victim provided I keep the gentleman's identity private and include no information that could lead to his identity being tied to the substance of the message itself.

Without further adieu, here is the letter minus the greetings and signatures:
Dear Peter,
On January 25, 2012 I was diagnosed with ALS. From that evening on-my life has changed drastically. I have always been a very active person but due to the progression of the disease, my activities are limited. I left work shortly after finding out I have ALS to spend more time with my family and to acquire much needed rest. My symptoms were, and still are, muscle aches/twitches, headaches, stiff neck, noticeable muscle loss in my chest/back, cramps in my legs/feet and general fatigue.
My upper body is my weakest and biggest problem at this time. It is now getting difficult or impossible to do some of my everyday activities because I can barely raise my arms. Shaving, bathing, dressing, getting in and out of the bed are all a challenge and require assistance.
The people at MDA of Greater New Orleans have been a Godsend. They are so helpful and are always willing to help you with any issue you face. The staff at the MDA clinic that I go to every 3 months is also wonderful – they are friendly, knowledgeable professionals that will do anything to help.
I have a very supportive family and close friends that are always there for me no matter what my needs are. My wife and I have met some great friends, other pALS (People Living with ALS) and their wives. We get together often for dinner and other activities and find that these are the most wonderful relationships. We are all dealing with the same struggles, even though we are at different stages with ALS, but understand what each other is going through. This group bond that we have as made a huge difference in our lives.
If it weren’t for organizations like MDA I would not have had the opportunity to meet these pALS and receive the help we need. I know there are more hard situations in the future, but with all the support I have, I will get through it all.
Thank you for supporting the Covington Lock-Up, MDA and my family.
Since we're keeping the author of the message anonymous, there will be no signature or goodbye message included here. That said, if that does not touch upon a soft spot in your heart, one must wonder if you even have one.

That disease (ALS) is among the most debilitating and torturous illnesses in the history of mankind, and my heart goes out to everyone and anyone who has ever suffered from it, God rest their souls.

Amyotrophic Lateral Sclerosis (ALS)
Amyotrophic Lateral Sclerosis (ALS)

The friend posted a blog about ALS, why he is motivated to help find a cure and why he feels that you and anyone else reading his blog should donate to the MDA Lock-Up event Thursday, May 23 in Covington, Louisiana. The friend will be "arrested" as a "repeat offender" and will need to post "bail" (your donations) in order to be granted release from the makeshift holding cell at the restaurant at which the event is being held.I will ask all readers of this blog though to please consider donating anything you can --- even if its just a single dollar --- to his "bail bond" as finding a cure for ALS is about as good a cause as one could conceive of to financially support.
If you can afford to help out, please do so, and know that his company, EGAN Medical Equipment, will be matching each and every dollar donated up to $1,000.

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