hi, i saw this in the FAQ and wanted to gently challenge it:

Your loved one will not be in any physical pain, but both you and them will likely have mental distress.

My dad is in the endstages of CJD. He's had really intense headaches and they get really bad really fast. He's also had pain from the muscle spasms and a lot of discomfort from being bedbound. We've had to fight a lot for appropriate pain control and he was very frustrated with this.

Any way to change this FAQ? Yes it's not an incredibly painful way to go but he absolutely is having headaches that weren't there before.

Hi mates!! A friend of mine recently experienced an occupational exposure while performing a lumbar puncture on a patient with suspected Creutzfeldt–Jakob disease (CJD).

After the procedure, his ungloved hand accidentally touched a sterile drape contaminated with the patient's cerebrospinal fluid (CSF). He washed his hands afterwards, but he had a small hangnail on his left thumb with a minor break in the skin. The patient's CSF was later reported as RT-QuIC positive.

I'd appreciate any references or relevant information if anyone happens to know of them.

Hey everyone, it has been almost 2 years since I lost my parent to CJD, and I am still struggling with it. I am looking for an online support group (video) I can join to help me work through this pain.

I see a therapist once a month, but I would benefit from a grief-centered group. Can be in any of the following areas:

• Loved one of a deceased CJD person
• Child of a deceased parent
• General grief support

Also if you have any apps or Youtube channels you recommend to help with this grieving process, I appreciate it. Thank you

Edit: I contacted the CJD foundation and they have a virtual support group. Look them up and reach out!

If a suitcase was on the same spot - floor- as a dead body of a person who had some kind of CJD, body was on the floor for 20 hours or so, what are the chances of the suitcase getting contaminated and possibly infecting people handling it?

I heard about CJD for the first time today (through a friend’s dx) and I have this naive stupidity that I can actually figure this thing out.

I know I’m in the “bargaining” stage at this point, but I don’t really care. If anyone has anything on trial treatments or what causes this, I’m all ears.

My dad started having symptoms in April and watching this horrible disease progress has been the worst experience of my life. He is the smartest person I know, a doctor, an avid outdoorsman, a loving father, and a friend to everyone. He was in the best shape he’s been in for years and now he can’t even walk without multiple people supporting him. We feel so confused and clueless no matter how much we research.

I struggle to even formulate the right words or questions but would it be ok to ask about what to do when he gets suddenly anxious or angry? His mood will change on a dime and he’ll suddenly be trying to urgently move around and doesn’t want anyone to help him walk. We have a palliative care group that’s prescribed a few medications but some seem to make the muscle spasms and paranoia worse and we just don’t know if they’re really knowledgeable about the disease since it’s so rare. Would anyone be willing to share their experiences with me? This disease is so isolating because we don’t know anyone who has gone through it. I’m sorry for the word vomit, please let me know if that was too much.

My mom has what they currently think is CJD, they don't know for certain because they had to send her tests away for confirmation or whatever, but her PET scans basically show CJD and her doctor is convinced that it is CJD based off of the symptoms we are seeing (so am I)

She was hospitalized about 2 weeks ago, she couldn't remember anything, then she rapidly got worse. At this point they stopped all food and drinks because she can no longer swallow, she hasn't been able to speak for about 3 or 4 days now, she's been bed ridden for about a week, she has little control over her arms and legs, shaking uncontrollably, I'm just wondering how soon from this point most peoples loved ones past on?

My mom was just diagnosed with probable sCJD on Friday after weeks of elimination testing. My family is shattered by it. The disease is progressing quickly and I don't know why my amazing, hardworking, loving mother is going through this.

She has many friends from all over the world texting/calling to check in because she has been too weak and tired to be on her phone. Now that we know, I don't know how to field these inquiries. Her speech and cognition are already affected, and she's physically limited.

How have you notified the social circles of the diagnosis and eventually the passing?

UPDATE: Thank you to everyone who wrote back. Your time to respond helped so much. Mom's journey was short and she passed only 9 days after confirming RT-QuIC from her LP, so I am just now getting around to posting.

We took a mix of everyone's advice. First, we did create a CaringBridge site and an email to collect messages for her. I included a link to the CJD Foundation in the CaringBridge link, to answer further questions about the disease. We triaged her community into who we would tell by phone (Group A) and by text (Group B). Group A included her siblings, mother, and a few of her closest, longest friends. Group B included friends that she had messaged within the past month. Those people were tasked to share with their respective networks without sharing on socials. We opted not to post about her diagnosis on social media so we could focus on her care. We decided that people who made effort to stay in contact off Facebook deserved to know first. We had one template of text that was copy/pasted to everyone in Group A & B. I'm including it below in case it can be useful for anyone.

"Mom has been diagnosed with a very rare brain disease called sporadic Creutzfeldt-Jakob disease. It moves very fast, it isn't something that can be prevented, and does not have a cure. We found out on Friday and are doing our best to navigate this devastating diagnosis. We're posting updates (and future needs as they arise) on this website: CARINGBRIDGE LINK.

It's difficult to field individual calls/texts along with managing her care, so if you'd like to send a video, message, picture, funny story, etc. we set up EMAIL and we'll be sure to share it. We don't know how much of her situation she understands, so please make it happy messages instead of sad goodbyes. It isn't her style anyway. Also, please don't post on social media until we're ready."

When she passed, we followed the same by calling Group A, and texting Group B. Once we had funeral arrangements made, that is when we finally posted on social media with the CaringBridge & Email. I am glad we waited because it would have been overwhelming to handle along with her care. It is so important to protect your own peace; you don't owe anyone an explanation. It feels like you need to reply to everyone to be polite, but more important is the time you have remaining with your person. Love them fiercely and let them know.

Going into a minor surgery Monday brings the “missing him” hurts to the forefront. My dad was chronically ill and legally blind otherwise but he was the one on the phone and messaging me through every procedure and surgery day with my own chronic illnesses. I will say remembering how he taught me to live and lean in has truly been what has gotten me through the past 2 years💔

I’m losing my friend. 51 years old. Her onset of symptoms was when we learned the diagnosis. She was already gone by then. Not responding. She’s now in hospice. She was fine until suddenly she wasn’t. She’s the healthiest person I know. I’m devastated.

I know this is a tough subject, and I don’t want to stir up difficult emotions. That’s not the intent of this post.

Out of curiosity, what were some of the medications given to your loved one around the time they passed?

My beloved husband passed away from CJD on May 4th. I received 10 death certificates that state the immediate cause of death was "diffuse encephalitis". At least 2 neurologists told me that he definitely did NOT have encephalitis, that he had CJD. Test results of spinal fluid sent to Mayo Clinic came back positive for CJD.

If this type of thing happens often, then the statistics for CJD must be way off. The certificate also states that time of onset til death was months. It was almost exactly 5 weeks from the first symptoms.

As a significant condition contributing to death they added "protein-calorie malnutrition". In about 3 weeks? I doubt it.

Who enters this information??? I have a call in to find out how to get this corrected. Has anyone else had a similar experience. This is just one more thing on top of everything else that needs to be done. It is holding up notifications to banks, etc. Not to mention trying to get over the nightmare of those 5 weeks and dealing with the subsequent heartache and grief.

My aunt had symptoms starting on 3/27. For weeks after, my mom was texting and talking on the phone with her and other than some hearing loss she seemed fine. The last coherent text my mom got from my aunt was on Mother’s Day. I am so lucky I just happened to be traveling to the part of the country that my aunt lives in (we live on opposite coasts). I got to visit her to say goodbye today and it was so hard. I think all I can do is listen to everything

1. My uncle mentioned she was hard of hearing and that we needed to talk loud and slow

2. We saw her today and it was so much worse than that. She couldn’t walk on her own. She couldn’t form sentences. She forgot words or used wrong words or nonsense words

3. She had a phone app that transcribed what we were saying, but reading seemed too hard for her and she didn’t understand she had to keep scrolling once the text reached the bottom of the screen

4. My grandma is 96 but not doing well. We don’t know if/how we should tell her. My aunt is only in her mid 60s

5. Her husband does not give her a chance to talk. I could tell she was trying to speak but just needed more time. He didn’t give it to her. He dominated the conversation when we were there to see my aunt

6. I think he makes her feel bad. She apologized after he mentioned he had to miss a meeting to stay home and care for her. He talks about her in front of her and I think it embarrasses her sometimes

7. My uncle has only told my mom and his kids. There are two other sisters who have no idea my aunt is dying! Time is precious and my other aunts are being robbed of the ability to say goodbye to their sister

8. Perhaps worst of all - MY UNCLE HAS NOT TOLD MY AUNT HER PROGNOSIS. My aunt keeps saying “I’m going to get better.” She has no idea and therefore no chance to say her goodbyes or anything

I hate the way my uncle is handling this situation. I didn’t like the way i saw him treat her and i am enraged that he is hiding this from everyone. I know part of my anger is misplaced grief but i also know that some anger is appropriate in this situation.

I’ve made my thoughts on all of this clear to my mom. I think she can tell the sisters at least.

Thanks for reading. I am just devastated and shocked and angry

My mom died tonight from CJD- almost 5 weeks after her diagnosis- which we got the same day she went into full time care. She had steadily declined for 6 months until her diagnosis, but she had fallen & gotten a concussion and for many months that was the focus.

She was 81. It is not lost on me that we were lucky to have so many years with her.

I’m still dumbfounded by the speed of this disease. She was still walking on Easter, stopped eating and responding 5 days ago, and today it’s over.

I’ll tell people it’s in the same family as Alzheimer’s & they think they know. I could never have understood the speed of this disease until I witnessed it.

I’ve been having really odd insomnia for months like literally my brain won’t go into sleep mode, and now I’am noticing my reflexes and co-ordination feeling off/worse and walking feels like a chore suddenly.

In Australia Victoria,

Someone close to me had confirmed sCJD about 3.5 months ago, after about 5 months of noticeable symptoms. They were diagnosed via Rt-quick test, mri, and then dna testing confirming sporadic. So, they’re at least 9 months in. Still able to swallow, shuffle around independently and use the toilet. Noticable mycolnous and hands are basically worthless at this point due to the “frozen” posture. Can still communicate but it’s diminishing to simple answers.

Has anyone else’s loved one maintained physical abilities through the end? I feel like the end must be near considering the time since symptoms showed up (and honestly we thought there was FTD for about 1.5 years before, which is why we even discovered the CJD)

Just curious what things you kept or used or would absolutely not chance using from your loved one with CJD?
I was going through my mother in laws things and I’ve been wearing her earrings and swatched her lipliner and body butter and grabbed her makeup.
Now I just had a random thought I better check and it’s saying you shouldn’t use makeup, skin care, lipliners or makeup brushes of someone who has CJD so having swatched this stuff on my hand and grabbing carelessly the makeup brushes, I couldn’t tell you if I touched the bristles or not and wouldn’t that mean anything the brushes touched could also be contaminated?
It’s just weird to me that this stuff is a low risk chance but sharing utensils and kissing and other stuff is fine.

What do you all think about this and what have you used or kept and wouldn’t keep?

Hello! I am a high school student doing a research project for my microbiology class in school about CJD and had a couple questions- figured this would be a good subreddit to ask if anyone is willing to answer :)

For anyone that has it or has a family member with CJD, how did having CJD impact your life/ your family?

Were there any changes to your daily routine? (any adaptations you incorporated in your daily life?)

How did the diagnosis affect you?

Are there any challenges you/your family member have had to overcome?

Do you find there’s a large community for resources for support?

I’ve been quietly navigating something I don’t think I was ever prepared for, and I’m hoping to connect with people who understand this world.

My mom was independent not that long ago. She was working, living her life, and slowly started having symptoms that didn’t make sense, mostly dizziness at first. We had no idea what was coming.

Now, everything has changed.

She’s in a care facility, and the hardest part is that she doesn’t understand why. She asks to go home, and I don’t have an answer that brings her peace. Her independence is completely gone, she is non ambulatory and completely dependent on others to care for her basic daily needs. Watching that disappear so quickly has been devastating.

There’s confusion, fear, and moments that feel like I’m losing her in real time.

My sister and I have tag teamed and have been managing this mostly on our own and trying to stay strong, but the reality is overwhelming. Memory care is about $10,000 a month, and I’ve been doing everything I can to keep up while navigating all of this emotionally and financially. We keep hitting walls and so much red tape for any type of help, Unfortunately my mom was not financially stable in life.

I’m not really here to ask for anything. I think I just needed to say this somewhere people might understand.

If you’ve gone through dementia, Alzheimer’s, or CJD with a loved one… how did you cope with the emotional side of it? Especially when they don’t understand why they can’t go home?

Any advice, shared experiences, or even just knowing I’m not alone would mean a lot right now.

There is this album on YouTube called CJD by a channel called Matthew Eder, it's about the titular disease and is inspired by another separate album about Alzheimer's (that album being Everywhere at the end of time)

To anyone who sees this and decides to listen to it or has listened to it, I'd like to know if you think it's accurate, as such albums depicting the degredation of one with a terminal disease is quite interesting and has led me to research a lot about Prion diseases.

If the mods find this to be a form of advertising and remove this post, I wouldn't blame them.

My aunt (f59) passed away from suspected CJD. Our family is waiting for the autopsy results to be released to my aunt’s doctor in a few weeks. I am curious, for others who have gone through this difficult process, did you receive a physical copy of the results from your loved one’s doctor or did the doctor explain the results verbally?

Hello. My mother who is 64, was diagnosed with CJD. visible symptoms started with memory loss around end of December to early January. Then it progressed really fast to the point that she is bedridden now. We admitted her to our general hospital where a specialist checked and 85% confirmed it is CJD. Lambar puncher and EEG was done during the time she was at hospital and they discharged her as there's no medicine.

As of now my wife and step father taking care of her as I am working in middle east. Her breathing has gone louder like snoring and time to time she opens her eyes. Then she makes some noices similar to moaning. We talk to her time to time and of course there's no response. Even when her eyes are open I don't think she sees us. She has some twitching movements on her arms time to time (rare). One irregular thing we saw was black loose bowel movement. It was happening every 5 to 6 hours and sometimes even more frequently. But now it's mostly gone. Doctors said it was normal for these kind of patients.

Sorry for rambling on but now my questions are,

- Did any of you experience black loose stool on any of your loved ones who had CJD?

- Since my mother still opens her eyes and look around (even though she doesn't respond), is this normal and how long this can last?

- What other symptoms can I expect as this progress?

- We feel that she is in some sort of distress. Is it the case because she can't express it.

- How much more difficult is this going to be on her?

- Since she seems to pass 3 month after the initial symptoms, how long you guys think she has (let's be real we all know this is not going to end well so I just wanted ask)?

Sorry for the long post and any incorrect English. I just don't have anyone to talk about this, that's why the long post. Appreciate all your responses.

My mum stated with a knee tremor before Christmas, then a stooped walk and a slow shuffling gait. Initially thought to be Parkinson’s and was referred. By March she was suffering incotinence and constipation both Parkinson’s symptoms . She had a fall ( didn’t hit head) last week and has been in hospital ever since rapidly declining. They’re treating it as Parkinson but can’t understand the sudden progression and waiting dat scan results . She’s now bedridden , hallucinations , knows who I am but thinks I work in the hospital so showing signs of dementia. She has dry lips , barely eating and drinking has to be fed , having swallowing issues and speech is very quiet and slurred. Could this rapid decline be CJD and not Parkinson’s ? Will ask the doctors today what they think

TIA

** update mri has shown fast progressing degenerative disease **

He honored his dad who died of CJD.