Althouse: "I cannot speak, walk or use my hands anymore. I am unable to move my limbs or vocalize a grunt. I communicate with my eyes..."

March 3, 2019

"I cannot speak, walk or use my hands anymore. I am unable to move my limbs or vocalize a grunt. I communicate with my eyes..."

"... using my gaze on a specialized computer screen to write a letter at a time. I am unable to extend my neck or swallow. I drool incessantly, choking on my secretions several times a day. Deep breathing is a thing of the past. Even simple breathing is done with the help of a machine. I am a physician and a scientist and built a career studying brain diseases, and now I am living with one of the diseases that I study. I am just 40 with an amazing wife and two beautiful children.... The irony is that I had just started working on ALS when my symptoms started.... So I don’t stop. I can’t stop. I spend my days conducting research on, thinking about, living and breathing all things ALS.... A colleague recently asked why I still spend my time doing ALS research. Why not watch movies and take it easy with the time I have left?... This is what I said: I would stop doing research if my colleagues in the field could find treatments that slowed down my progression instead of just offering ways to keep my body alive.... If anyone would fight for me, I would stop doing ALS research today."

From "I’m a scientist studying brain illnesses. Now I’m a lock-in, living with one of them: Lou Gehrig’s disease" by Rahul Desikan (WaPo).

ADDED: From the comments: "And a brilliant photograph speaks of the absolute love of your wife — we can only imagine what she is going through to care for you."

14 comments:

rhhardin said...: Entertainment for women. Nicholas Sparks can do it as a movie.; 3/3/19, 6:38 AM
Fernandinande said...: Lou Gehrig was probably the unluckiest person ever - what are the odds of dying from a disease that has the same name as you?
+

Lou Gehrig called, he wants his disease back.
+

Lou Gehrig walks into a bar, oh wait, no he didn't.
+

Fortunately I'll be gone the rest of the week, folks...; 3/3/19, 6:53 AM
Wince said...: Reminds me that I really have nothing serious to complain about, and how fortunate that makes me.; 3/3/19, 7:00 AM
Fernandinande said...: Said Ms. Zilbersmith, "For those of you who don't know, I was diagnosed with Lou Gehrig's disease a couple of weeks ago.... I hate baseball. I'd really much rather have been diagnosed with a basketball disease. Maybe Wilt Chamberlain disease. That's the one where you have sex 20,000 times and then you die."; 3/3/19, 7:00 AM
Fernandinande said...: irony is that I had just started working on ALS when my symptoms started.

My first thought was, as per g.cochran's etc "New Germ Theory" - short version is "if you don't know the cause, it's probably an infection", so he probably caught it, e.g.

"Enteroviral Infection: The Forgotten Link to Amyotrophic Lateral Sclerosis?"

"Fungal infection in neural tissue of patients with amyotrophic lateral sclerosis."; 3/3/19, 7:09 AM
Crimso said...: "if you don't know the cause, it's probably an infection"

I had a physician tell me once that dermatologists say "If you know what it is, then you don't need to touch it. If you don't know what it is, then you REALLY don't need to touch it."; 3/3/19, 7:39 AM
David Begley said...: The guy who “stole” my high school girlfriend during our freshman year in college died of ALS years later. He didn’t marry her. She’s remained single. The ALS victim twice married and his second wife was on the other side of a stupid probate case after his death. I wouldn’t wish ALS on anybody.

One of my friends is the grandson of Wally Pipp; the guy Lou Gehrig replaced in the Yankees’ lineup that day.; 3/3/19, 7:48 AM
Sebastian said...: ""If anyone would fight for me, I would stop doing ALS research today" . . . From the comments: "And a brilliant photograph speaks of the absolute love of your wife — we can only imagine what she is going through to care for you.""

So someone is "fighting" for him? Besides the thousands of researchers already focusing on ALS?

The scientist angle adds a twist, but unfortunately all unfortunate ALS patients are unfortunate in the same way.; 3/3/19, 9:54 AM
Rick said...: That's the one where you have sex 20,000 times and then you die."

It goes quicker than you think doing taking 3-4 at a time.; 3/3/19, 10:44 AM
Henry said...: I don't get the cynicism. Sure it demands great sacrifice from the people who love him. Of course it does. But what is worse for his loved ones: caring for the man, or watching him die?

I have a friend who does lab work for an ALS research team. His group was started by a young businessman whose brother got ALS. That guy could have probably made a lot more money starting a software company than a non-profit ALS research foundation. But what is life worth if you ignore the mission given you?; 3/3/19, 10:46 AM
Big Mike said...: I can't read the linked article without paying the Post, which I decline to do. But Tuesdays with Morrie, by Mitch Albom, is about Albom meeting regularly with a favorite professor as that professor slowly died from ALS. One line really stuck with me, the gist of which was that someday the professor would not only be unable to get on and off the toilet himself, but he would be unable to wipe himself -- and then he'd find out who his true friends really were.

Sounds like a bad way to die.; 3/3/19, 10:51 AM
Bill Peschel said...: "using my gaze on a specialized computer screen to write a letter at a time"

Thanks to David. In the late '70s, when I was a copy boy at The Charlotte Observer, I worked with him. He was interested in computers, and when the mainframe was installed, got into the workings and learned how to bring the system down. He was the son of the business editor, so he never got into trouble over it.

We parted ways. He traveled to Colorado, and he was hitchhiking by the side of the road when he was clocked by a drunk driver. Paralyzed from the waist down.

Until he eventually died, he helped programmers work on a project that tracked eye movements over a keyboard broadcast on a monitor.

In ways we'll never know, we affect those who come after us.; 3/3/19, 11:25 AM
Yancey Ward said...: I would have taken my own life before I let it get that far, I think. Probably means I am a weaker person than the person in the story- really, when I think about Hawking, it awes me the strength of will it must have taken to endure that condition for that long a time.; 3/3/19, 2:20 PM
Yancey Ward said...: Big Mike,

You can open the link "in cognito" and read it- that is how I did it.; 3/3/19, 2:21 PM