My uncle, who is also my godfather, has been diagnosed with Creutzfeldt-Jakob Disease. When my mother told me, all I could think was “HE HAS MAD COW??!!!” That was the only association I have with the name. Apparently, mad cow is only one type of CJD.
He had a stroke a couple of months ago. It was a mild one and he seemed to be recuperating really well, then he started deteriorating quickly. Within two weeks he went from going out to dinner with my mom and their siblings and chatting along to needing a wheelchair and being disoriented and showing dementia and not being able to follow a conversation. Apparently, his life expectancy is a couple of months.
There’s something about the rarity of the disease that makes this harder to accept. I’m not close with him, but I feel just sort of shocked and baffled.
And there is my not-so-mundane but still pointless tidbit for the day.
CJD is one of those diseases for which we really truly need to legalize and maybe even encourage mercy killing!
From all that I’ve ever read about it, this is one gawdawful gruesome shitfuckingterrible way to spend one’s final weeks.
I’ve suggested before that anyone with this diagnosis needs to commit suicide just as fast as you can, while you still can – Although to be sure, from what I’ve read, by the time you can get a diagnosis, you’re probably already too far gone to do so.
Just gruesome horrible several weeks of unspeakable torment that no sentient piece of protoplasm should ever have to suffer.
Okay, a no-so-ranty remark/question: What is available in the way of palliative care for these patients during the final weeks? I have a vague idea it might be something like fatal familial insomnia, where no amount of sedatives can even quite put the patient to sleep. Does anyone know how these patients are treated?
my Mom died of this, it was not diagnosed until an autopsy. from the start of her symptoms until her death was over a year, a long time for this disease. the autopsy found it was “sporadic” CJD which, near as I can tell, means they don’t know where the hell it came from.
it wasn’t a particularly hard way to go: I work in long term care and see people with dementia all the time. her’s just progressed a lot faster than someone with Alzheimer’s , for example. but she didn’t necessarily suffer until the very end.
I had the privilege of caring for her and, frankly, she was mostly fun. after I mourned the fact that the Mom I had known was gone she was a pretty happy dementia patient and although she had a lot of falls (despite alarms, a walker, everything else I could think of) she never hurt herself. I suppose since she was only 71 - not that old.
so, it’s not necessarily worse than anything else that can happen to you. but it will end your life pretty fast.
not necessarily. I got my Mom on hospice and they kept her comfortable.
I have seem many worse deaths - COPD would be my idea of the worst way to go
ETA: sorry for your Uncle, get him on hospice asap and it doesn’t necessarily have to be that bad.
my doctor (at the time) told me it is a “one in a million” diagnosis but that means there are 250 to 300 new cases every year. and that’s only what they know about.
He’s in “palliative care.” That’s not the same thing as hospice, right? I’m a bit fuzzy about some of these terms. I know that it means managing the symptoms, but I don’t know if someone says “He’s in palliative care with no hope of recovery” if that means a hospice-like situation.
It makes me sad for him, obviously, and his wife and kids, but also for my mom. She really doesn’t handle death well at all.
Nobody wants a diagnosis like this, of course, but I think it is rather reckless to give out advice like “commit suicide as fast as possible” to anyone. You barely know anything about this person, about their particular disease course, their eligibility for clinical trials, or what palliative care has to offer that person.
do you know how they made the diagnosis? it’s been years since my Mom died but I though they had to sample cerebral-spinal fluid to do it, not sure if that’s true now.
prion diseases are not yet well understood but I know CJD is just one of them and they happen when a protein “folds itself” in such a way it starts to replicate like a virus.
but the main thing I wanted to say is don’t be freaked out - it doesn’t have to be worse than any other way you die. if he gets good care he can be kept comfortable.
anyway really interested might want to watch this video.
He is in his late 70s, I think. He’s older than my mother, who is in her mid 70s.
I think there are hereditary types of CJD, but more often it just springs up out of nowhere, or seeming nowhere. (This is according to my mom and reading on the internet. I’m far from knowledgeable!)
Oh, I am so sorry for you and your family. CJD is a hard diagnosis to hear because there is no hope. We usually use that hope of “beating cancer” or managing heart disease to buffer the reality of death. CJD doesn’t let us do that, and that hurts. Letting all that in at once is horrifying.
Jesus Haploid Christ! I hope you are never within shouting distance of anyone who has a family member with any sort of terminal illness!
Looking at, for instance, http://www.ninds.nih.gov/disorders/cjd/detail_cjd.htm (lots of other sites if you don’t like that one) it seems to be a very rapidly progressing dementia. There are lots of other dementias out there. Are you suggesting people with those dementias all be terminated as well?
My grandmother’s doctors suspected JCD, but it was never confirmed. It was a rapid decline, but she died in her own bed and from everything I can recall about her illness and death (she died in 1986) I think Senegold’s post is quite a bit overstated.