8mm
Posted on 03/23/2008 12:50:05 PM PDT by wagglebee
From the living room of Dr. Richard Olney's Corte Madera home, sliding glass doors offer a wide-open view of the tidal marsh in front of his house, of passing clouds and of the shorebirds that fly in and fly out.
Inside, the man who once rode mountain bikes and ran triathlons sits nearly motionless in his wheelchair. He watches the world with the same intense intellectual curiosity that made him one of the nation's leading experts in ALS, or amyotrophic lateral sclerosis - popularly known as Lou Gehrig's disease.
Since 2004, ALS has been slowly killing him.
Of unknown origin, the disease is marked by the destruction of motor neurons, the nerve cells that trigger and control muscle movement. It is a progressive and invariably fatal illness. Patients are fully alert to the end. They retain the sense of touch and mercifully experience no abnormal pain, but within two to four years, most patients are unable to move, swallow or breathe.
The terrible irony of Olney's self-diagnosis generated news stories around the world. After colleagues confirmed that he had the disease, he took the same advice he had offered to more than a thousand of his own patients: He put his financial affairs in order, lined up home-based nursing care and prepared for death.
"He hasn't taken a moment to feel sorry for himself or despair," said Dr. Catherine Lomen-Hoerth, director of the ALS center at UCSF, which Olney headed until his illness. He was her colleague and mentor and had an office just down the hall. Now, he is her patient.
Olney's illness began as a weakness in his right knee. For some, the descent is slow and gentle, for others it is steep and fast. By 2005, it was apparent that Olney's was the latter kind.
(Excerpt) Read more at sfgate.com ...
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It is. Heartbreaking as well.
There are several subtypes of ALS. Gehrig had the fast moving kind while Hawking’s type of ALS is a lot slower in progression. Many advances have been made in ALS research since Hawking was first diagnosed.
My husband had a distant relative that died from this about a year ago. He put it down in a weekly journal and sent it out to everyone that requested it. It was horrible yet amazing to “hear” about the progression.
yes he has... als and many other diseases take their toll in various time frames. I have two friends where their fathers lived with als for about 10 years and another friend where her son was dead in about 3 months. I can say the same for lupus, some die very quickly and very young while others live full lives with the disease under control with occasional flare ups.
My grandmother died from ALS. It is one of the most horrible ways a human being can die, the mind is fully intact while the body becomes immobile. Eventually the diaphragm stops working and they suffocate to death.
Thanks for posting this article. My Mother has ALS. She was diagnosed about 2.5 years ago but refused to accept it. She was in denial until the end of November 2007. She fell and was put in the hospital and then moved to a nursing home. She now is bedridden, cannot speak, but still can write with one hand.
It is a devastating disease to watch every day. My Mother did not help matters though. She refused to accept anything and has now left a financial, legal amd medical mess for me to clean up. She is taking it hard as she is not an easy person to get along with.
And she was just a smaller, extremely hyper, athletic girl who - although she weighed less than half of what I did - literally ate 2-3 times as much as I did (She would usually order 2 entres when we went out to dinner!) She just burned up and out in less than a year.
The only other thing I could say is that, she tried every possible "homeopathic" remedy she could find. Unfortunately, most were aimed at rallying her immune system. In retrospect, I would have tried searching for things that would destroy her immune system - as that was what was killing her. I think ALS is like the human immune system's "Windows blue screen of death". You need to shut it down and reboot it.
I am clueless as to how to do THAT however as I've never found the Ctrl-Alt-Del button....
We all have our weaknesses. I can't clean up vomit - can't do it. I puke every time I've tried. I don't call my friends or family - although I love them all and think about them often. At the same time, it doesn't bother me to deal with gaping wounds and compound fractures
And, watching someone's (awesome) body die while their mind stays sharp is brutal.
So, don't even think less of them. They were just unable to cope in that area.
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