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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.
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.
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 didn’t 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 else’s riches. Abusers want the kid or spouse to behave. The mall shooter, the university shooter writes a statement with other people’s blood. It all boils down to ME.
“Next column I’ll 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 Michael’s 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 don’t 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 don’t 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 don’t 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 man’s 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.
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.
This is a memoir about a woman with ALS. Good reading but heartbreaking.
***************
It is. Heartbreaking as well.
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.
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.