Anyone know someone with ALS (Lou Gehrig's disease)

It's a debilitating disease. Eric Lowen of the duo Lowen and Navarro (they wrote "We Belong," which Pat Benatar had a hit with in the early '80s) has it. He was diagnosed I believe in spring of '04. I saw them play right after he was diagnosed and you couldn't really tell then. I saw them a year later (Feb. of '05) and he was walking with a cane and had to sit while playing on stage. Saw them again early this year and he's in a wheel chair now and hardly able to play guitar. Just tough to see this happen to him.

Here's the Lowen and Navarro website with some info on him:
http://www.lownav.com/

 

Buck's right.

I had the father of a friend whowas diagnosed with ALS in 2001. He passed away less than two years later.
We hold a golf tournament in his honor every year that raises about $35K annually for ALS research and comfort.

ALS or Alzheimer's? If I had my choice ... I couldn't make a decision.

 

My understanding has been that Hawking has the rarer form of the disease, familial ALS, which can allow for a longer term survival. I think even with that form, however, his survival is extremely unusual. But, outliers do happen.

 

A rarer form of ALS?

That is SUCKS2

 

Saw Lowen and Navarro in concert a couple weeks ago. Eric can't play guitar any more. He can still sing great, and he has a wondrous sense of humor about it all. He told of an interview he did with a radio station in which he was asked how he would like to be remembered.

"As a devastatingly handsome man in a wheelchair," he said, a wide smile spreading across his face. The audience cracked up.

Eric and Dan said they were going into the studio to do a new album.

 

There was a writer with the Des Moines Register who was diagnosed with ALS a year or two ago IIRC, and he wrote a book for his kids that became a big fund-raiser for his care. Anyone know more about this? I read something about it but can't remember when or where.

 

There is a reporter for the Inland Valley Daily Bulletin/San Bernardino Sun who has ALS and writes about it. I believe his name is Wes Woods, but somebody correct me if I have the name wrong.

 

According to Wikipedia, Rob Borsellino. It says he died in May 2006, a little less than two years after being diagnosed. You can access a few of his articles up here:
http://desmoinesregister.com/apps/pbcs.dll/section?Category=NEWS&theme=borsellino&template=theme

 

It's an absolutely horrible disease. We had a man here, probably in his 30s, that was diagnosed. At the time, he was really active - played hockey, coached fastball teams, etc. Over the past two years, it's gotten to the point where he can barely talk and he's confined to a wheel chair where he has to be helped with almost everything.

The worst part about this disease, I think, is that unlike something like Alzheimer's, your mind is still very much in tact and you are very aware that your body can't do the things you want it to do.

 

And I see Fenian Bastard mentioned Tuesdays With Morrie. Mistakes or not, Morrie Schwartz does describe a similar loss of functions to that the man in our community has faced — though it hit Morrie at a much older age. It is a worthwhile read.

 

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Buck's right.

I had the father of a friend whowas diagnosed with ALS in 2001. He passed away less than two years later.
We hold a golf tournament in his honor every year that raises about $35K annually for ALS research and comfort.

ALS or Alzheimer's? If I had my choice ... I couldn't make a decision.

[/quote]

My stepdad was diagnosed with Alzheimer's 7 years ago. While his mental capacity slowly eroded over time (we were able to have some quality time with him, methinks thanks to some of the new meds available) physically he was still able to get around ok, eat on his own etc... about 18 months ago he started losing thos abilities. Lost weight rapidly. Couldn't keep his balance at all etc... 6 months ago he was diagnosed with ALS, in addition to the Alzheimer's. Evidently ALS is common in Alzheimer's victims. There's a word for it, like they pair together or something. SO tragic. So while his mind is being eaten away, so too is his body. I truly can't decide what's worse. Together it's obviously beyond belief. They gave him 6-12 months when it was diagnosed and he still seems to pushing on. I don't know if that's good, but it's admirable.

 

They're both neurodegenerative disorders. It is not unheard of to have both.
The slang term used is "ALS-heimers" or "A.L.S.-heimers."
It is the saddest of the sad and those stricken need a strong belief and family structure.
Be good, be strong, Spudboi.