Dear Friends,

I want to thank you for allowing me to convey to you what my life is like with Amyotrophic Lateral Sclerosis (ALS - Lou Gehrig''s disease - Motor Neurone Disease), and hopefully convince you how and why you should join me in making the difference needed to find and fund the cure I know is out there.

Unlike so many Fayetteville [USA] residents, this is my home-town, where I returned after 21 years in the US Air Force. The Air Force was the best thing that ever happened to me. I'd become a small part of something so much bigger than I, and loved the sense of giving back, doing something for my country. I'd seen much of the world, loved my work, and had no intention of slowing down, fully intending to match dad's Army E-8 before retiring.

In January 2002, I began to notice the muscle between my right thumb and finger twitching, and a general weakness in the hand. By July, I''d been flown from my duty station in Germany to a US Army Medical Center in Washington DC. An ALS diagnosis takes a battery of tests to rule out all other possibilities, a process of elimination.

After a week of tests, I was diagnosed "75% probable" for ALS, and my world came to a screeching halt. I'd been advised to surround myself with those I loved and to "get my affairs in order". ALS slowly began it''s advance, slowly overtaking my life, even though symptoms were still minimal. I was granted a medical retirement, 100% service-connected the following January.

Today, I''ve lost all but the very last of any independence I once had.  I get my nutrition through a feeding tube, I have to use a bi-pap, a type of external ventilator to lie down or sleep, as my diaphragm is too weak for proper respiration.

Because ALS has robbed me of my voice, I communicate through a computer that speaks for me, using a mouse with my semi-capable hand, through special software and on-screen keyboards, but I''ll soon need a head mouse or eye-gaze system for computer interface  These systems typically cost close to $US10,000.

I rely on a constant stream of caregivers 24/7, who must feed/shave/bathe and dress me, you name it. Privacy is a thing of the past. Those with a fast-progressing form of ALS may never make it 12 months, or even to a definitive diagnosis. 

Like the "Iron Horse", Lou Gehrig [US baseball player], I also consider myself maybe the luckiest man alive, having my VA disability compensation, AF retirement pay and Social Security benefits. I also have the wheelchair-accessible van as well as other various equipment to make my remaining life with "Uncle Lou" as comfortable as possible.  Others are not so lucky, as annual patient expenses can soar upwards of $200,000.

Just this past decade we have learned that military veterans are almost twice as likely to contract this horrific disease as the civilian populace. Though I continue to beat the odds, now approaching seven years post-diagnosis, I would not wish this disease, once referred to as "one of the top five cruelest diseases", on my worst enemy. I''ve also learned never to say "It''ll never happen to me" again.

Sincere thanks,  Steve

http://alsbytes.com