Sunday, March 9, 2008

Orlando to Washington in a wheelchair

I don’t know about you, but planning a tour from Orlando, Florida, to Washington, DC, in an electric wheelchair boggles my mind. But I kid you not a friend of mine, who also has ALS or Lou Gehrig’s disease, is going to do it. He isn’t doing it to raise funds or for his own benefit, he is doing it to raise awareness for this mysterious but incurable neuromuscular disease. If he does raise money over an above his expenses it won’t go to waste. He will give it to organizations conducting research for improved therapies or a cure.

Ken Patterson is leaving on April 19th from Orlando after the annual Orlando Walk to Defeat ALS event headed nearly 1,000 miles up the smaller roads and highways, through two major Army reservations. Ken is a veteran and he wants to make sure the public and his Army buddies know that those serving in the military have twice the incidence of ALS as the general public. That is pretty frightening because no one knows why this is true and Department of Defense research funds to study this are in jeopardy. Almost as frightening is that over 360,000 Americans have died since Lou Gehrig died nearly 70 years ago.

I met Ken and his wife and caregiver, Glenda, recently at an ALS event. I had known him via the internet and was always impressed with his vigor and dedication. In fact it was Ken who provided me with a list of key tips for emergency medical service people who come across ALS patients. It turns out that many health care workers are as ignorant about the disease as I was before I was diagnosed. That is a pretty scary scenario.

I was a little surprised to discover that he, like me, must depend entirely on an electric wheelchair to get around. But Ken also lost most of his speech and has only little movement left in his hands. He and Glenda came to the event with a bound notebook of issues he wanted the assembled ALS researchers to address. I mean this is one prepared son of a gun!

Now he is well on his way to making this long and arduous tour with his bicycle riding buddy, Jerry House, followed by Glenda in a support vehicle. This is one brave guy and one I am happy is on my side in trying to raise awareness about ALS.

His tour will end in Washington, DC, after a tour through Arlington National Cemetery. In Washington he will join hundreds of other patients with ALS, their caregivers and workers from all over the US for the annual ALS Association Public Policy Conference and Advocacy Day.

I am just hitting a few highlights about Ken’s Rolling Over ALS Tour. It is a treat to read about the details including the travel route and schedule on his website, Also you can make a donation and purchase a customized magnet ribbon which he hopes will cover his support vehicle.

It seems appropriate to mention that Ken is one good natured fellow and not grumpy like some.

1 comment:

Anonymous said...

Anyone who has ever lost a loved one, neighbor, co-worker, friend, coach, teacher,... to ALS, please pop for a $40 magnet and send that person's memory to Washington, DC to spread the word about ALS!