Re: Sporatic CJD

software · ‎06-08-2016

Joe was discharged from the medical center on 8/2, transferred to a hospice facility close to his home.

It's all so shocking.

Financialgrl · ‎03-13-2010

I lost a very good friend last year from this disease. Early on we noticed she kept falling and one day it’s like she woke up and didn’t know who she was. I know it sounds strange - parts of her memory would come and go. She lost her use of words - she would talk and it’d not make sense.

She would have periods where she was filled with rage and throwing things at ppl. She died within 5 months of her diagnosis.

software · ‎06-08-2016

No, not strange.

The friend who first told me about his illness is much closer to his family than I am and what you describe are the same symptoms exhibited by Joe. He would call various people and just talk nonsense. He sounded like himself, so people tried to give him benefit of the doubt. Such a horrible disease.

So sorry for your loss.

@Financialgrl wrote:
I lost a very good friend last year from this disease. Early on we noticed she kept falling and one day it’s like she woke up and didn’t know who she was. I know it sounds strange - parts of her memory would come and go. She lost her use of words - she would talk and it’d not make sense.

She would have periods where she was filled with rage and throwing things at ppl. She died within 5 months of her diagnosis.

software · ‎06-08-2016

Joe passed away today.

SilleeMee · ‎05-22-2016

I'm sorry. I know it was inevitable and it must be hard for his family. @software

I have a SIL who has Huntington's. She is slowly dying. I have seen her decline but from a distance. My nephew, her only son, just turned 21 is having a difficult time with this. He knows about his genetic future and that is what breaks my heart.

software · ‎06-08-2016

Thank you

It's such a hopeless feeling.

The last time I saw him was May of this year. He knew I was retiring at the end of May and since he was turning 66 in July, he was getting his ducks in a row to do the same. He was very healthy, played golf regularly, traveled. He took care of his mother until her passing.

My friend who called to tell me of his diagnosis learned about it about a month ago.

Just a month.

@SilleeMee wrote:
I'm sorry. I know it was inevitable and it must be hard for his family. @software

I have a SIL who has Huntington's. She is slowly dying. I have seen her decline but from a distance. My nephew, her only son, just turned 21 is having a difficult time with this. He knows about his genetic future and that is what breaks my heart.

brmmom · ‎04-07-2015

@ software so very sorry for your loss, it's such
A devastating disease.

software · ‎06-08-2016

I went to Joe's funeral Monday.

What I expected to be a funeral.

Joe had been cremated.

I asked a friend later in the day if that was true, there was no mention of a burial in the funeral announcement.

She told me the law required cremation.

I was looking at the information on the CDC site and there seems to be no requirment from them, so it must be a state law.

SilleeMee · ‎05-22-2016

@software wrote:
I went to Joe's funeral Monday.
What I expected to be a funeral.
Joe had been cremated.
I asked a friend later in the day if that was true, there was no mention of a burial in the funeral announcement.
She told me the law required cremation.
I was looking at the information on the CDC site and there seems to be no requirment from them, so it must be a state law.

Interesting info about cremation @software. I wonder if whoever writes those laws knows that prions cannot be destroyed with heat. The ashes would still contain potentially infective stuff after incineration. I would not want to keep the ashes near me. Maybe they get further treatment, not sure. I never gave it any thought about what they did with the bodies with CJD. It never occurred to me until now.

software · ‎06-08-2016

@SilleeMee wrote:
@software wrote:
I went to Joe's funeral Monday.
What I expected to be a funeral.
Joe had been cremated.
I asked a friend later in the day if that was true, there was no mention of a burial in the funeral announcement.
She told me the law required cremation.
I was looking at the information on the CDC site and there seems to be no requirment from them, so it must be a state law.

Interesting info about cremation @software. I wonder if whoever writes those laws knows that prions cannot be destroyed with heat. The ashes would still contain potentially infective stuff after incineration. I would not want to keep the ashes near me. Maybe they get further treatment, not sure. I never gave it any thought about what they did with the bodies with CJD. It never occurred to me until now.

According to the CDC

There are no special interment, entombment, inurnment, or cremation requirements for patients with CJD. Interment of bodies in closed caskets does not present a significant risk of environmental contamination and cremated remains can be considered sterile, as the infectious agent does not survive incineration-range temperatures.

I don't know what procedures were done to the body prior to cremation. Something I thought as odd, Joe lived in a town of about 100,000 but they used a funeral service in a small town (4,500 pop.) about an hour away. Makes me think the funeral service chosen specializes in disposals like this.