Thanks for stopping by.  After my diagnosis in July 2002, I came to realize there were only a few well-organized ALS-related links pages online, and those weren’t all-inclusive. Through this site, I hope to provide a reliable resource for PALS (patients), CALS (caregivers), families and friends of those affected by ALS and looking for answers. Secondly, my blog, “ALS Bytes” serves as a resource to keep my family and friends updated on my condition, daily hurdles and as a conduit to raise awareness. ALS affects each PALS differently, and my story is but a drop in the pond of the estimated 30,000 people living with ALS in the United States.

I was diagnosed 75% probable for ALS in July 2002 at Walter Reed Army Medical Center in Washington DC.  I also received confirmation at two separate German hospitals near my duty station. An ALS diagnosis consists of 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 began it’s advance, slowly changing my life, even though symptoms were still minimal. I was granted a 100% service-connected medical retirement the following January. I returned to my hometown after 21 years in the Air Force. Serving my country was the best thing that ever happened to me, despite the fact that serving in the US military almost doubles your risk of getting ALS.

In 2009, ALS taught me a very hard lesson humanity, not everyone can deal with watching their spouse go through such an illness, and I found myself divorced.  I had very little hope for being able to continue, until my prayers were answered when  Cindy crossed my path on a Christian dating site. She and I were married this past January, and it was like everything we’d gone through in our lives prepared us for each other. Cindy gave up her nursing career to stay with and care for me. I have to rely on her to feed/shave/bathe and dress me, you name it.

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 most of my voice, I communicate through a computer that speaks for me, using a mouse with my semi-capable hand, through special software and an on-screen keyboard.  I  also have an eye-gaze system for computer interface when I’m no longer able to use a mouse; these systems typically cost over $10,000.

WHAT YOU CAN DO TO HELP

• Sign-up to sponsor, join or support me/my team, “Steve’s Striders”, in the annual Fayetteville (NC) Walk to Defeat ALS. The walk is held every spring at Fayetteville’s Festival Park. Go to my walk team page and donate. You can also sign up to join my walk team, and do your own fundraising, or just sign up as a virtual walker just to show your support if you can’t donate or make the walk.

• 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.

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