Tuesday, October 11, 2011

May God Bless Joe...

Just yesterday afternoon, we were out in front of the house watching our eight year old daughter master riding her bike without training wheels for the very first time... and out of nowhere appeared Joe. Admittedly, we were distracted as we wanted to capture the moment, but Joe was unaware of the accomplishment, and so he strolled over as if it were just another day.

Oddly, we had never met Joe before but he was interested in chatting so we politely indulged him, while keeping an eye on our priority. "That's a nice scooter you have there...they run between $2000 and $3000." he said. "Oh, I really don't know about that; this was a gift." I replied. "Well, it's a nice one, and I may need one myself; I'll find out soon!" Joe responded. His comment just begged to be acknowledged so I took the bait. "May I ask why?" "Well," he said, "I have a degenerative neuromuscular disease..." and the conversation stole my attention.

Could it really be true? The man standing before me, a man I'd never met, who lives right down the street is also afflicted with ALS? Well yes, apparently so... only Joe can walk, and his speech is just fine and he denied any issues with breathing and swallowing. He described his unique presentation of the disease as Flailing Arms, which after further investigation via the internet, I learned was called Brachial Amyotrophic Diplegia, a form of ALS that may or may not, turn into full blown ALS.

Joe explained that he's had it for six years and that it has only affected his hands and arms. When he extended his arms toward me, I could see the misshapen hands he held out, looked hollowed in the same places as mine, his fingers curled as the tendons tightened, and the muscles in his arms were mostly gone. It was all too familiar; he indeed had some form of ALS.

He shared that he was participating in a study with Dr. Siddique, a neuroscientist with Northwestern's Feinberg School of Medicine, who recently announced his discovery of the cause of ALS. We were well aware of Dr Siddique and the discovery; it has given us hope and now we learned that Joe down the street was donating spinal fluid, blood and tissue samples to help find a cure. There are roughly 35,000 registered cases of ALS in the US on any given day, and it is believed that there may be as many as 300,000 case internationally.

So...May God Bless Joe, who can still walk, and talk, and breathe; I pray he won't ever need a scooter...

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