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Walk to Help Improve Quality of Life For Those With Lou Gehrig’s

Jim and his daughter on her first day of Kindergarten just three months before he lost his fight. Photo courtesy of Get In The Game™

Jim Steel was a man who’s future held no hope and therefore his focus was on making the most of the time he had remaining. Jim body was consumed by ALS, also known as Lou Gehrig’s disease. ALS is is terminal. There is no cure and this horrible disease took my friend Jim’s life on November 27, 2007.

ALS is a progressive neurodegenerative illness that attacks nerve cells in the brain and spinal cord and those diagnosed are given a life expectancy of two to five years. Most people who develop ALS are between the ages of 40 and 75, with the majority after age 60, although it can occur at a younger age. Also is relatively rare; with only about  2 people per 100,000 per year developing this disease.

My friend Jim Steel was the second person I’d known with ALS. The first was a childhood friend’s mom. We were just kids, only in high school when my friend’s mom was diagnosed and I will never forget watching as her body failed her. The most horrific thing about ALS is that those with it are held prisoners inside their own body. Their brains function, but their body shuts down and they’re unable to perform basic functions and eventually they’re not able to speak on their own. I can’t fathom being trapped inside my body, fully aware of the world around me and not able to communicate my wants and needs.

I’m so sad to say that I now know another person with ALS. The aunt of my friend Robyn was diagnosed recently. Robyn and her husband John dropped everything and drove to Florida to bring Aunt Jan to Binghamton so they could look after her. Aunt Jan is a firecracker. She’s got a quick wit and a bright smile and my hope is that Aunt Jan and others living with ALS are able to be a taken care of and comfortable as possible.

Aunt Jan

There’s no cure for ALS, but that doesn’t mean those who live with it don’t deserve the best care and the technology possible to help them live the best they can in the time they have left. If there’s one walk you participate in this year, I beg you to please consider making it the Binghamton ALS Walk on Saturday August 9th. The ALS Association’s walk will raise funds that allow our local chapter to sustain care services and support research for much of 2014.

You can learn more about how to join my friends Robyn, John and Aunt Jan at the Binghamton ALS Walk on August 9th at Rec Park in Binghamton here.

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