# My uncle has Creutzfeldt-Jakob Disease **URL:** \ **Category:** Miscellaneous and Personal Stuff I Must Share\ **Created:** [October 31, 2014, 11:56pm UTC](https://boards.straightdope.com/t/my-uncle-has-creutzfeldt-jakob-disease/703185 "2014-10-31T23:56:50Z")\ **Posts on this page:** 20\ **Page:** 1
**Author:** ![wonky](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/wonky/32/393_2.png) [@wonky](https://boards.straightdope.com/u/wonky)\ **Post date:** [October 31, 2014, 11:56pm UTC](https://boards.straightdope.com/t/my-uncle-has-creutzfeldt-jakob-disease/703185/1 "2014-10-31T23:56:50Z")
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. ---
**Author:** ![Cazzle](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/cazzle/32/75_2.png) [@Cazzle](https://boards.straightdope.com/u/Cazzle)\ **Post date:** [October 31, 2014, 11:59pm UTC](https://boards.straightdope.com/t/my-uncle-has-creutzfeldt-jakob-disease/703185/2 "2014-10-31T23:59:56Z")
That’s one heck of a nasty diagnosis. So sorry to hear that this horrible disease has touched your family. ---
**Author:** ![Senegoid](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/senegoid/32/6606_2.png) [@Senegoid](https://boards.straightdope.com/u/Senegoid)\ **Post date:** [November 1, 2014, 12:13am UTC](https://boards.straightdope.com/t/my-uncle-has-creutzfeldt-jakob-disease/703185/3 "2014-11-01T00:13:19Z")
**OMG!** Please don’t take this the wrong way! 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? ---
**Author:** ![IvoryTowerDenizen](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/ivorytowerdenizen/32/17937_2.png) [@IvoryTowerDenizen](https://boards.straightdope.com/u/IvoryTowerDenizen)\ **Post date:** [November 1, 2014, 12:18am UTC](https://boards.straightdope.com/t/my-uncle-has-creutzfeldt-jakob-disease/703185/4 "2014-11-01T00:18:59Z")
I am so very sorry. What terrible news. My deepest sympathies to your family. ---
**Author:** ![JackieLikesVariety](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/jackielikesvariety/32/296_2.png) [@JackieLikesVariety](https://boards.straightdope.com/u/JackieLikesVariety)\ **Post date:** [November 1, 2014, 12:24am UTC](https://boards.straightdope.com/t/my-uncle-has-creutzfeldt-jakob-disease/703185/5 "2014-11-01T00:24:26Z")
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. > [@](#): > > From all that I’ve ever read about it, this is one gawdawful gruesome shitfuckingterrible way to spend one’s final weeks. 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 ---
**Author:** ![JackieLikesVariety](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/jackielikesvariety/32/296_2.png) [@JackieLikesVariety](https://boards.straightdope.com/u/JackieLikesVariety)\ **Post date:** [November 1, 2014, 12:32am UTC](https://boards.straightdope.com/t/my-uncle-has-creutzfeldt-jakob-disease/703185/6 "2014-11-01T00:32:19Z")
missed the edit window 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. ---
**Author:** ![Broomstick](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/broomstick/32/246_2.png) [@Broomstick](https://boards.straightdope.com/u/Broomstick)\ **Post date:** [November 1, 2014, 12:51am UTC](https://boards.straightdope.com/t/my-uncle-has-creutzfeldt-jakob-disease/703185/7 "2014-11-01T00:51:29Z")
I’m so sorry to hear about that diagnosis. ---
**Author:** ![wonky](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/wonky/32/393_2.png) [@wonky](https://boards.straightdope.com/u/wonky)\ **Post date:** [November 1, 2014, 2:22am UTC](https://boards.straightdope.com/t/my-uncle-has-creutzfeldt-jakob-disease/703185/8 "2014-11-01T02:22:04Z")
> [@JackieLikesVariety](#): > > ETA: sorry for your Uncle, get him on hospice asap and it doesn’t necessarily have to be that bad. 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. ---
**Author:** ![lavenderviolet](https://avatars.discourse-cdn.com/v4/letter/l/cdc98d/32.png) [@lavenderviolet](https://boards.straightdope.com/u/lavenderviolet)\ **Post date:** [November 1, 2014, 4:53am UTC](https://boards.straightdope.com/t/my-uncle-has-creutzfeldt-jakob-disease/703185/9 "2014-11-01T04:53:10Z")
> [@Senegoid](#): > > 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. 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. ---
**Author:** ![lavenderviolet](https://avatars.discourse-cdn.com/v4/letter/l/cdc98d/32.png) [@lavenderviolet](https://boards.straightdope.com/u/lavenderviolet)\ **Post date:** [November 1, 2014, 4:54am UTC](https://boards.straightdope.com/t/my-uncle-has-creutzfeldt-jakob-disease/703185/10 "2014-11-01T04:54:24Z")
> [@jsgoddess](#): > > 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. Hospice is a subset of palliative care, so it sounds like the right people are involved. Condolences. ---
**Author:** ![susan](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/susan/32/17537_2.png) [@susan](https://boards.straightdope.com/u/susan)\ **Post date:** [November 1, 2014, 5:06am UTC](https://boards.straightdope.com/t/my-uncle-has-creutzfeldt-jakob-disease/703185/11 "2014-11-01T05:06:51Z")
I’m very sorry to hear it. What a shock. ---
**Author:** ![Cicero](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/cicero/32/3594_2.png) [@Cicero](https://boards.straightdope.com/u/Cicero)\ **Post date:** [November 1, 2014, 10:42am UTC](https://boards.straightdope.com/t/my-uncle-has-creutzfeldt-jakob-disease/703185/12 "2014-11-01T10:42:49Z")
js goddess, I know so very little about this illness. Is your Uncle elderly? And is it likely to be hereditary? ---
**Author:** ![The\_Holdsworth\_Effect](https://avatars.discourse-cdn.com/v4/letter/t/848f3c/32.png) [@The\_Holdsworth\_Effect](https://boards.straightdope.com/u/The_Holdsworth_Effect)\ **Post date:** [November 1, 2014, 11:10am UTC](https://boards.straightdope.com/t/my-uncle-has-creutzfeldt-jakob-disease/703185/13 "2014-11-01T11:10:54Z")
Sorry to hear this; condolences to your family. ---
**Author:** ![monstro](https://avatars.discourse-cdn.com/v4/letter/m/ba9def/32.png) [@monstro](https://boards.straightdope.com/u/monstro)\ **Post date:** [November 1, 2014, 1:48pm UTC](https://boards.straightdope.com/t/my-uncle-has-creutzfeldt-jakob-disease/703185/14 "2014-11-01T13:48:24Z")
I’m sorry, **jsgoddess**. ---
**Author:** ![JackieLikesVariety](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/jackielikesvariety/32/296_2.png) [@JackieLikesVariety](https://boards.straightdope.com/u/JackieLikesVariety)\ **Post date:** [November 1, 2014, 2:25pm UTC](https://boards.straightdope.com/t/my-uncle-has-creutzfeldt-jakob-disease/703185/15 "2014-11-01T14:25:23Z")
> [@](#): > > there is no one typical path the disease process takes. CJD has a multitude of possible symptoms and what one patient may experience at the beginning of the process, another patient may not experience at all. Each form of CJD may present differently. from the [CJD Foundation’s website](http://www.cjdfoundation.org/) 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.](https://www.youtube.com/watch?v=rq-_zrJhWL8) ---
**Author:** ![wonky](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/wonky/32/393_2.png) [@wonky](https://boards.straightdope.com/u/wonky)\ **Post date:** [November 1, 2014, 3:39pm UTC](https://boards.straightdope.com/t/my-uncle-has-creutzfeldt-jakob-disease/703185/16 "2014-11-01T15:39:06Z")
> [@Cicero](#): > > js goddess, I know so very little about this illness. Is your Uncle elderly? And is it likely to be hereditary? 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!) ---
**Author:** ![Brynda](https://avatars.discourse-cdn.com/v4/letter/b/e79b87/32.png) [@Brynda](https://boards.straightdope.com/u/Brynda)\ **Post date:** [November 1, 2014, 3:59pm UTC](https://boards.straightdope.com/t/my-uncle-has-creutzfeldt-jakob-disease/703185/17 "2014-11-01T15:59:59Z")
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. ---
**Author:** ![twickster](https://avatars.discourse-cdn.com/v4/letter/t/ec9cab/32.png) [@twickster](https://boards.straightdope.com/u/twickster)\ **Post date:** [November 1, 2014, 9:52pm UTC](https://boards.straightdope.com/t/my-uncle-has-creutzfeldt-jakob-disease/703185/18 "2014-11-01T21:52:13Z")
> [@Senegoid](#): > > **OMG!** > > Please don’t take this the wrong way! > > 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. What the hell? How can you possibly consider this an appropriate response? Warning issued for being a jerk. **twickster** , MPSIMS moderator ---
**Author:** ![Canadjun](https://avatars.discourse-cdn.com/v4/letter/c/76d3ee/32.png) [@Canadjun](https://boards.straightdope.com/u/Canadjun)\ **Post date:** [November 1, 2014, 10:40pm UTC](https://boards.straightdope.com/t/my-uncle-has-creutzfeldt-jakob-disease/703185/19 "2014-11-01T22:40:56Z")
> [@Senegoid](#): > > Please don’t take this the wrong way! > > 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? 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](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? ---
**Author:** ![koeeoaddi](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/koeeoaddi/32/408_2.png) [@koeeoaddi](https://boards.straightdope.com/u/koeeoaddi)\ **Post date:** [November 1, 2014, 10:59pm UTC](https://boards.straightdope.com/t/my-uncle-has-creutzfeldt-jakob-disease/703185/20 "2014-11-01T22:59:00Z")
My sympathies, **jsgoddess**. 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. [Next page](https://boards.straightdope.com/t/my-uncle-has-creutzfeldt-jakob-disease/703185.md?page=2)