Walk to Defeat ALS, a personal letter, some info and a plea!

This letter is written by Steve White, a friend of Forward Focus.

My Walk to Defeat ALS letter
By Steve White
Hello, my name is Stephen White, and I’d like to do my best to convey to you what my life is like with Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease, and 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 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.

Everything came to a screeching halt when, in July 2002, after a week of tests at Walter Reed, I was diagnosed “75% probable” for ALS. An ALS diagnosis takes a battery of tests to rule out all other possibilities, a process of elimination. 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 lay 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 $10,000. 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, 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.

Please read on to discover how easy it is to help make a difference, as well as some important facts on ALS.
WHAT YOU CAN DO TO HELP

* Sign-up to sponsor, join or support me/my team, “Steve's Striders”, in the first Fayetteville (NC) Walk to Defeat ALS. The walk will be May 9th 2009 at Fayetteville's Festival Park. Go to www.catfishchapter.org and click on the new Fayetteville walk logo. If you don't have internet access, checks may be mailed to me at my home, as well as to the Catfish Chapter, addresses at the bottom of the page.

* Sign-up for your corporation to sponsor the walk. The corporate sponsorship brochure may be viewed at http://www.stevewhitenc.com/Walk_CorpSponsorship100708.pdf

* Consider talking to your church, scout or other group about getting involved in fundraising or even volunteering on walk day

* Visit my website, http://stevewhitenc.com for more fund-raising ideas



Facts You Should Know About ALS

* 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.

* 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.


Sincere thanks,
Steve