Friday, March 21, 2008

ALS Awareness

Comments please!

My name is Bill Hamley, I'm 64 years old. I took early retirement in 1998 since retirement benefits were beginning to be cut by the company for which I worked. Since that time I have been diagnosed with ALS or Lou Gehrig's disease. I guess that my story really begins as a result of 9/11. My daughter encouraged my wife and I to join her and her husband in a run/jog/walk 5K Memorial race in honor of a local 9/11 victim. I hadn't run for many many years but felt it was a great cause. The result was that I became hooked on running. During a race on Thanksgiving Day 2003 I started stumbling over
my right foot. I thought I was just tired.

Little did I know that it was the first symptom of ALS. The stumbling continued to happen on occasion. In June of 2004 I fractured my pelvis in a bicycling accident and after recovering from the injury I found that I could no longer run. I couldn't get my legs to move fast enough to run. At that point I thought I just needed more time and the legs would strengthen and I would be running again. That day never came. At that point the stumbling became tripping and falling then just falling without tripping by losing my balance.

After going back to my orthopedic doctor, physical therapy, Lyme tests, MRIs, blood test and EMG/NCS test I was finally diagnosed with ALS. Since at time my balance is almost completely gone. I feel very fortunate that I started running when I did. Running improved my breathing and that is so very important to anyone with ALS. Unfortunately since I chose to retire early and was diagnosed with ALS seven years later I was not eligible for disability. Because of the 20/40 rule the 34 years that I worked and contributed to Social Security did not count.

While in physical therapy a fellow patient came up to me one day and asked me how progress had been made in the treatment of ALS since Lou Gehrig had passed on from the disease. I had to tell him that almost no progress had been made since then. There is one drug available that extends life by 2 to 3 months. Not much time at all when you are given 2-3 maybe 5 years to live. We can put a man on the moon, computers have become a household item but since 1869 when ALS was first identified we have no treatment and no cure. On top of that those of us who chose to serve our country in military are twice as likely as the general population to contract this disease.

This disease has made it necessary to move from our house to an apartment that provides a greater measure of safety for me and frees my wife of the need to take care of yard and snow removal. I grew up not knowing two of my grandparents and now face the fact that my six month old grandchild may grow up not knowing one of her grandparents. The thought of not beginning to grow up is almost more than I can bare.

Please help us bring this disease to the forefront and at least find a treatment so that we can hold out till someone finds a cure.

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