Skip to comments.Researcher with ALS finds solace in expertise
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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ALS is on the rise for some unknown reason. A while back the only person I knew of to have it was Lou Gehrig.
Now, I have personally known 3 people in the last 5 years who had it ... all dead now.
ALS kills in about 2 years.
Alzheimer’s takes about 10 years.
Huntington’s (in my family) is merciless. You stay alive forever unless something else kills you.
Parkinson’s ... takes a long time.
Alzheimers and Huntington’s take your mind as well as your body.
ALS does not. I don’t know which is worse.
Stephen Hawking has ALS ... been ‘chaired’ for a lot longer than two years.
I have a very good friend with ALS. His is expressing slowly. It is a truly horrible illness. BTW, the “no abnormal pain” comment is cr@p. As the nerves die, the muscles attrophy. As this progresses, the muscles can go into spastic twitching and cramping. It hurts a lot.
He has had the illness for several years. Even the simplest things in life are a real struggle for him. But he keeps on going, working, playing, living. It’s the bravest and most heartbreaking thing I’ve ever seen. Many of his “friends” have disappeared — they can’t deal with it. I can’t hate them for that, although I do think less of them for it. Maybe that’s not fair, but I can’t help it.
I know there are exceptions. I was speaking in general and the 3 people I knew well lasted 2 years.
“ALS kills in about 2 years.”
That’s a fairly typical expression of the illness. Can go quicker, can go much slower. They have no idea why. Also, the level of medical care that can be afforded matters, as does the level of care the person with ALS wants. (Some don’t want to stay on a respirator for years and years locked into their bodies, unable to move, talk, or even breath on their own, even if that is an option.)
This was written to honor a friend of mine who suffered from ALS for over four years. He died December 15 last year.
“When I research this column I usually comb through dozens of recent court cases looking for something that will interest a lot of Tracy readers. A cursive review of the court database is a trip down the mean streets of our society. I began to earnestly research a few days ago.
In mind of the holidays, I tried searching for Christmas stories but came up with crimes committed at parties, with children neglected or abused at Christmas, with parents fighting over child custody, with non-Christians offended by the cross hidden away in the desert in the Southland, with claims of false advertising. Not exactly Miracle on 34th Street fare. Somehow it just didnt seem to fit the season.
“There is a common thread, however, that runs through many of these cases and that is selfishness. Murderers want revenge. Thieves want their share of someone elses riches. Abusers want the kid or spouse to behave. The mall shooter, the university shooter writes a statement with other peoples blood. It all boils down to ME.
“Next column Ill be back to checking these out but this is a holiday time for much of the world and whether you celebrate Christmas, Hanakkuk, Ramaden, Kwanza, Winter Solstice, Mother Earth, Father Time or something else, the common thread in all is a call to a level of living above our usual selfishness. When we let the holiday spirit come into our lives, we stop permitting the petty things of the world from making us mean and spiteful.
“The past weekend I saw an example of the unselfishness and the holiday spirit writ large. Michael was a tall, barrel-chested bear of a man, a loving husband and devoted father, an important executive professionally, but with a twinkle in his eye for everyone. For the past several years he has been fighting a degenerative disease that has progressively robbed him of the use of his body.
It began in his toes and moved up inexorably, month by agonizing month, until this month it reached nearly to his ears. He had gone from being an in-charge bear of a man with joy for everyone to being unable to move, eat or breathe. For the past several months, he could communicate only through eye signals.
“He was loved so he had many visitors at the rehabilitation hospital where he spent the past two years and each person, without exception, came back from the experience buoyed by Michaels love of life, love of family and God. He had a smile for everyone until the disease reached the muscles around his mouth, then his eyes smiled still.
“Last Saturday he voluntarily ended his struggle in a dignified manner. It had not been easy for him. His wife says he stayed imprisoned in his body longer than he wished so she could get strong enough to cope without him. He stayed until his five children could reach the same level of understanding. He personified unselfishness as he endured so others could grow.
“When they were ready to let him go, he slipped the bonds of mortality and went home to his Creator, surrounded by family, friends, hospital staff and surely the angels. We laughed, joked, occasionally wept as he left this earth gazing into the eyes of his wife, his eyes conveying the love he could no longer speak.
“As a child, Christmas meant counting the presents to me. Though I later outgrew that obsession, still I got caught up annually in the marathon of rushing around, shopping, cursing in parking lots, competing to get better gifts than someone else. I listened to Christmas music, shopped, sewed, cooked, wrapped, mailed, caroled, donated, munched, exhausted myself and gained more weight.
“Right now those things dont matter. Wrapped in the awe in seeing a friend transition from mortality to immortality, I can really see the world as it pauses to recognize this auspicious time of year. I see the serenity as nature pauses from growth to regroup for spring. I notice the green fresh life that comes with the rain. I see good will on the faces of people who also have the real spirit of the holidays.
“I dont get so annoyed at the shopping carts left helter-skelter on the parking lot, or the confused person in line in front of me. I dont mind parking in Timbuktu. I listen less to the acrimonious campaigns, avoid gossipy news stories, turn off the noise all around me. I look for gifts that really convey the importance of love, family, hope and optimism.
“And as I have stopped and listened, I hear the better part of man: the generosity, the singing, the silence, the laughter, the devotion. One mans unselfishness has placed, for me, so many other things in their proper perspective. Rest in peace, Michael, and thanks for showing me the real holiday spirit. I wish to all, peace on earth, good will towards all men.”
The column appeared December 24, if I recall.
First of all, not everyone in San Francisco is a liberal and I really don’t see anyone lying about this.
It is still hard to remember all the great times we had, starting as high school freshmen. Yet the memories attract nonetheless.
I was rescued from cancer nearly six years ago. I hope I live to see ALS attain the same rescue rates.
Most disgusting disease I've ever seen.
I wouldn't even wish it on Hillary.
I, personally, am 99% sure it is caused by a virus. I am also fairly sure that I also carry the virus - but it will never effect me as my body managed to handle it and render it dormant. It would take me weeks of typing to explain why.
I am now, once again, very happily married (I'm lucky with finding AWESOMELY great and beautiful women (considering I ain't no Brad Pitt!)) I Still miss Rachel sometimes. And we could sure you her financial wisdom around the house and in our business right about now.
This is a memoir about a woman with ALS. Good reading but heartbreaking.
I think he has less than a few months to go now. He will be missed greatly.
“I, personally, am 99% sure it is caused by a virus. I am also fairly sure that I also carry the virus - but it will never effect me as my body managed to handle it and render it dormant. It would take me weeks of typing to explain why.”
Can you try? Any insight would help. Maybe you’ve seen something that nobody else has, and maybe that insight could help lead to something helpful for ALS sufferers. Do you have a particular virus in mind?
I’ve read that some researchers think the illness is cause by a combination of factors including viral, environmental, and genetic. “Perfect storm” kind of thing. Or maybe they are just grasping at straws. Sigh.
I cant hate them for that, although I do think less of them for it. Maybe thats not fair, but I cant help it.
Exactly how I feel. These were men who had been together for over 40 years. On the bright side, I have renewed a few old friendships with the couple of guys who did see it through to the end.
My Mother left this Earth over 13 years ago. I miss her dearly.
I understand the pain everyone experiences.
Prayers up whenever someone needs them!
Terrible disease which deserves to be made a thing of the past.
FWIW, my mom was in the epoxy and urethane industrial resins/coatings business for thirty years. Of the founding staff from the early 60’s, cancers and neurological problems claimed almost all of them. I worked there during school breaks. By then they had dust collectors and breathing aparatus for the plant personnel. Nasty stuff however.
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.