Creutzfeld-Jakob Disease?

eskimobaby87October 21, 2006

My 84 year old father has a "probable" diagnosis of Creutzfeld-Jakob Disease. Is there anyone else here who is dealing with this disease?

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agnespuffin

Have you done a Google search about it yet? It sounds so much like Alzheimers that I wonder how they decide which it is. I would think that the care would be about the same.

It's going to be a hard road for both of you. Take good care of yourself.
Aggie

    Bookmark   October 22, 2006 at 9:00AM
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eskimobaby87

agnespuffin,

Yes, I've researched the disease quite a bit. It is similar to Alzheimers in terms of some of the symptoms. The hallmark of CJD is rapid onset and progression of the disease. Alzheimers tends to follow a slower progression. CJD is considered a "rare" disease affecting only one in a million, but there is some belief that it is more common than statistics indicate. The fact that it resembles Alzheimers (and other garden variety-type dementias), AND the fact that it is not a disease many in the medical profession are familiar with, often leads to misdiagnoses. The average life expectancy is six months.

The diagnosis is "probable" because we don't want to put my father through the brain biopsy which is the definitive diagnostic test. Back in July he was doing fine, paying his own bills, organizing his own medications, driving, etc., (I live with him and he had a small amount of age related mental decline, but nothing significant). He had developed a problem with anemia so we admitted him to the hospital for tests. After he received some anesthesia, he had a slow time recovering his mental faculties and was suddenly quite unstable when walking. He came home and fell, fractured his back, went back to the hospital, became severely demented, and has never returned to his pre-hospital condition. Since that time (3 months), he has gotten to the point where he is totally incontinent, doesn't talk much, has problems swallowing, and is severely demented. Because this all happened so quickly, the neurologist, who has ruled out a multitude of conditions (inclulding Alzheimers, Hashimoto Encephalitis, brain cancer, etc.), determined he might have CJD.

I hear about other elderly individuals having similar experiences where they were fine but then suddenly they have some sort of an event (fall, anesthesia, hospitalization, etc.) which results in their loss of cognitive function. It would be interesting to me to know how many of you--caregives of the elderly--have encountered this type of situation where an individual suddenly develops dementia.

    Bookmark   October 22, 2006 at 1:22PM
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agnespuffin

It is a strange thing, isn't it. After reading about it, I remember a woman from our church. She was in her 80s, active, healthy, lived alone, drove her car, did her own shopping, etc. One day she got into the car and drove through the back of the garage. Then she drove around and around her back yard until she hit a tree. There was no evidence of a stroke or anything, but she very rapidly became quite mentally impaired and helpless in died within a short time. At the time it was thought to be some sort of rapid Alzheimers. After reading about the C-J Disease, I wonder if that had been the problem.

I know that it's a very troublesome thing for you. Maybe, by studying his case, the doctors will learn something that will help others.
Aggie

    Bookmark   October 22, 2006 at 4:14PM
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abbey_cny

I just read your post and had to share my experiences with my dad. He was 82, had some mental decline but my mom and I thought he was doing ok for the most part. He suffered from chronic pheblitis, and let it get it out of hand and had to go to the hospital for treatment with heparin. He went in in what we thought was reasonably good mental health and the next day we went to see him and he was completely out of it. He had pulled the iv's out, thought the Indians were after him (he bled when he pulled the iv's out, and somehow thought that meant he was being attacked by Indians) and it all went drastically downhill from there. The doctors told us it happens sometimes with elderly patients. They can function well when they are in their own familiar environment, but put them someplace different, like a hospital, and they loose their bearings. Whatever mild confusion/dementia they may have had will come out full strength. His behavior grew so unpredictable and hard to control that he needed 24/7 supervision and after a year in the hospital he went into a nursing home. I often wonder how he would have done if he could have stayed at home and avoided that hospital stay and drug treatment.

Abbey

    Bookmark   November 7, 2006 at 1:29PM
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