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Honored Contributor
Posts: 8,843
Registered: ‎06-08-2016

Creutzfeldt-Jakob-Disease-Fact-Sheet

 

I got a call from a friend yesterday, she told me a mutual friend of ours was in the hospital, diagnosed with sporatic CJD.    I had heard about it before just as general information but dfidn't know how serious a disease it is.

 

He will be released from the hospital this week to hospice.

I saw him about 2 months ago, he was vital, working.   Lots of energy, he always has something to say, big personality.   He's 65 and in otherwise good health.

 

She told me his symptoms are the same as in the attached article but she didn't know exactly how he was diagnosed.   

Honored Contributor
Posts: 24,717
Registered: ‎05-22-2016

I'm very sorry for your mutual friend @software. Very rare disease. While in school I studied it and was very intrigued. Do you know how he got the disease?

Honored Contributor
Posts: 8,843
Registered: ‎06-08-2016

She didn't know that either.

 

If I get any details in the future I'll share.

I feel so bad for him, he was going to retire soon.

Respected Contributor
Posts: 3,083
Registered: ‎03-10-2010

@software, that is dreadful.  I'm sorry that your friend is having to deal with this, and for what you are going through.

Contributor
Posts: 36
Registered: ‎04-07-2015

I'm so very sorry for you. My dad passed away August 2016 from cjd and it was and still is devastating. His doctor put him in the hospital to run some tests to find out why he was

Suddenly stumbling and falling a lot. He was also having headaches and dizziness. He went in the hospital on a Wednesday and we found out 2 days later. He passed away at home 11 days after that. He went down hill so fast we couldn't believe it. Just 2 days after we brought him home he could no longer eat, swallowing medication for his trembling was nearly impossible. We would dissolve his pills with water and use an eye dropper to

Get it in him. Even that made him choke. He couldn't talk after 3 days at home and went blind shortly after. We don't know if he knew what was happening to him because his brain was quickly being destroyed by prions. I thank God his doctor suspected it was cjd.

At first he thought he had Parkinson's diease until he saw how quickly my dad was deteriorating. We took him to a nurologist a month before he died and he said he probably had a stroke even though his MRI and cat scans showed no signs of one. 

It was the first case of cjd his doctor ever saw. What a horrible diease to witness.

It was the most devestating time of our lives. I miss my dad so much, we did so many things together. I am grateful to God that my dad lived for 79 years. The internet is full of people who died from it very early in their lives. I'm so sorry for anyone who has to deal with this awful diease.

Honored Contributor
Posts: 8,843
Registered: ‎06-08-2016

Re: Sporatic CJD

[ Edited ]

I'm so sorry for your loss.

 

When I first heard of his symptoms, I was thinking West Nile Virus or some other unusual virus.

I was blown over when I heard CJD and his prognosis is the same as your dad's.

Joe's started with stumbling, then couldn't carry on a conversation.  And like you mentioned, all his routine testing at the small hospital came back negative.   Then he was transferred to a University Hospital with a medical school   He was diagnosed within 48 hours.  He has a wife and grown son and many many friends, he's from a small town, knows everyone.

 

I would imagine its like losing someone to a car wreck or other severe trauma.   By the time the patient is diagnosed, it's too late to say goodbye.

 

@brmmom

 

Contributor
Posts: 36
Registered: ‎04-07-2015

Thank you for your kind words. I wish I knew at the time what I know now. Still seems unbelievable.

Trusted Contributor
Posts: 1,214
Registered: ‎03-16-2010

My uncle died from that around 2000. He had the same horrible symptoms. I didn't eat beef for probably a year after that. They think it's because he worked at the slaughterhouse for many years. So sad.

Honored Contributor
Posts: 8,843
Registered: ‎06-08-2016

So sorry for your loss.
Some of the reading I did online, said it could be associated with but not caused by mad cow.

 

Honored Contributor
Posts: 24,717
Registered: ‎05-22-2016

Re: Sporatic CJD

[ Edited ]

There was a large population of deer here in Colorado that tested positive for what is referred to as 'chronic wasting disease' (CWD) which is the deer type of prion disease...just as mad cow is for cows. Wildlife officials had to eliminate many deer and as far as I know there have been no humans reported to have gotten a prion disease from deer. But that doesn't mean it can't happen. I believe the wildlife officials keep tabs on deer and elk populations just to monitor the situation. What scares me is the  prions can remain in soil for years and are not affected by environmental factors like heat or UV. The prions just lay in soil and who knows how they get inside the animals, including the ones we eat. Burning of the infected carcasses doesn't destroy the prions...they are heat resistant. Prions are not living things but they act like they are...an ultimate creep factor.