I Have ALS but ALS does not Have Me

(The following article first appeared in the Asheville (NC) Citizen-Times newspaper on 4 March 2012.)

Amyotrophic Lateral Sclerosis (ALS) attacks the nerves that lead to voluntary muscles. When the nerves die, the muscles they control wither away to uselessness. The illness ended the career of Lou Gehrig, the great New York Yankees' first baseman. It is also known as Lou Gehrig's disease in the United States and Canada.

People with ALS (PALS) lose muscle function throughout their bodies, leaving them unable to walk, talk, swallow, or move their limbs. Mental ability is left intact for most PALS and so is the sense of touch. They watch their bodies deteriorate. They feel the itch that cannot be scratched and the cramped leg that cannot be moved. A great deal of research into the cause and cure for ALS is in progress but so far neither has been found. There are 30,000 people in the United States with ALS and most of them will die from the disease within two to five years of their diagnosis.

When I was diagnosed with ALS a little over five years ago, I thought my life was over. I remember thinking that everyone else was "in the land of the living," but I was "in the land of the dying." I told my daughters and friends that I would "live as long as I can as well as I can." I had no idea how long that would be. I did not think I would live five more years. I made arrangements for my funeral.

I have reason to celebrate now that I did not foresee when I was diagnosed. I have lived beyond the five-year mark of having the disease. I have read that only 20% of ALS patients do that. I grieve for those who have died, especially my friends Jill H. and Jimmy M. I thank God for each new day of life.

The other reason for celebration is that there is more hope for a longer life and for a cure for PALS than ever before. Several drugs are in clinical trials to see if they will safely and effectively slow the progression of the disease. Stem cells have been created from adult skin cells. There is hope that stem cell therapy will cure ALS and even reverse the effects of the disease. I hope to see this in my lifetime.

An earlier Charlotte Walk to Defeat ALS. Come join us this year!

I would like you, my readers, to celebrate my passing of the five-year mark. Come join me as I take part in the 2012 Charlotte Walk to Defeat ALS on April 28th. There will be lots of teams and around two thousand people walking in this upbeat and fun event. We will be raising money for the Jim "Catfish" Hunter (NC) Chapter of the National ALS Association. The Catfish Chapter has helped me in many, many ways. I am most grateful that the Chapter pays for a van service that takes me to my quarterly ALS Clinic visit in Charlotte. I would not be alive without the Clinic and I would not get there without the help of the Jim "Catfish" Hunter Chapter.

My team is the Swift Walkers. Come join us for the easy 1.8 mile walk. Make a donation to the Catfish Chapter that will be used to help people like me, to fund research for a cure, and to raise awareness about the disease. Search on the Internet for the Charlotte ALS Walk to learn more about the event and go to http://webnc.alsa.org/goto/swiftwalkers to join my team or to make a donation. Thank you and see you at the Walk!