I’ve been kind of curious about this. So my mom recently died from ALS.(Ok pneumonia but that was caused by it.) When she was in the hospital for her last few days she had a couple of student nurses taking care of her as well as the regular nurses. So one of us pointed out given how rare it is this might be the only time those student nurses ever see a patient with Lou Gherig’s disease. So question for you medical dopers.(doctors and nurses.) Is ALS really so rare that you might go your entire career and never see one patient? (Obviously if you’re a neurologist you’ll see a few but I mean in general.) Just wondering because I actually knew another person who got it as well. (So it seems weird that a disease is that rare and I personally knew 2 people with it.)
Well, I work in the ER, so I’m more likely to be dealing with the complications of something like this, fall, pneumonia, etc. and to be thinking in those terms rather than the actual disease. Having said that, I can’t remember the last time I had a pt with ALS.
I also wanted to pop in with this interesting tidbit, it seems that Lou Gehrig may not have had Lou Gerhig’s disease after all.
My father-in-law died of it and he played neither football nor baseball. And Tony Judt, a well-known historian/writer just died of it within the last month. So I don’t think it is that rare. But, according to one doctor I questioned about it (why has Hawking lived with it for 42 years, while the average prognosis is about 2), it is not one disease but a family of related diseases. And, sure enough, according to Wiki, Hawking suffers from neuro-muscular dystrophy, which is related to ALS.
I’ve only been a nurse for 2 1/2 years. I am currently in home health and I have 2 patients with ALS. I have also had 2 patients with Huntington’s disease and one with myasthenia gravis. One memorable patient I cared for in the hospital had a huge growth from his nose that probably weighed at least 8 pounds.
I’ve been a doc for over 25 years now.
I’ve seen about 4 or 5 cases.
Currently I have about 8000 patients go through my facility every year, and I think we have one active case in our infirmary.
Part of my job is to review death certificates, which I have been doing for a number of years. The population I cover is about 1 million. Off the top of my head I’d say I see ALS, at least as listed on a DC, a few times a month. That’s compared to CJD, which I might see once or twice a year, and MS, which I see at least once or twice a week.
I’m in my second year of student nursing, and I haven’t seen it yet (but EVERYONE has diabetes!)
As an assistant to an acupuncturist for 6 years, I saw 3 cases. One of them I helped in hospice care when he got too ill to come in to the office for treatments. Ugly way to die. I’m so sorry for your loss, and I mean that genuinely. It looks horrible to go through and it’s definitely horrible to witness.
Thanks for your concern. You’re right though, it was a rotten way for her to go and pretty difficult to watch.(Unfortunately very humiliating for my mom since in a way it basically turned her back into a baby. That was one thing that was really difficult for her.)
I guess a follow on from this is whether ALS sufferers typically die from ALS or from complications like falls, since that would obviously affect how many times you see it on a death certificate.
Wouldn’t that mean that Lou Gerhig still had Lou Gerhig’s disease, but that ALS shouldn’t be called Lou Gerhig’s disease? He could have had a cold and it would have been Lou Gerihig’s disease. I mean, any disease that he had would be, by strict naming conventions, Lou Gerhig’s disease…
Just sayin…
The wiki article outlierrn linked to says that
have agreed to donate their brains to the CTE study. Why would being a professional bowler increase the risk of CTE?
One of my favorite advice columnistslost her own mother to ALS, and she’s written very movingly about the experience. It sounds like something I wouldn’t wish on my worst enemy.
(link to her description:
scroll all the way to the bottom of the chat
I had no idea before I read it.)
Often, death certificates have an immediate cause of death, and then contributing factors. So in those cases, ALS would show up in the contributing factor sections.
In theory, and per the clear and explicit instrcuctions printed on the document, yes. In practice? As likely not than so. A great many DCs are incomplete, incoherent, or just plain nonsensical.
Hmm, I guess this is going to sound funny but she made it sound if anything less bad than it was. (Which as I say is weird but the disease is nasty and humiliating.) Yes, she’s got it right on that when I think about what mom went through it chokes me up.(Although in my case it’s alot more recent.)