CJD (Human form of mad cow desease)

[Sandy407]

Hi Im new to this, and my 76 yr old mum is being tested for CJD. She first became unwell in Dec 11 when she was found with a blood clot in her heart but since then she has been on what I call "fast track dementia" In three months she has gone from a fit healthy, full of life independent mum to a small, frail, old lady that cant do any thing for herself except get a glass or spoon to her mouth. She in doubly incontinent, can be aggresive, and can just about get around with help. I had to pound on doctors doors to get her refered back to heart consultant and he couldnt believe the difference in just a short time. We went for a MRI scan and have an EEG in mid May (if we can move her by then). The tests are looking for CJD due to the incrediable pace her dementia has proceeded. If anybody has come across anything like this before please post me as I dont really know how much time we have if reports of this desease are right.

Sadly mum passed away on 4th May after a rapid decline and a brain haemorage. All the scans/tests came back normal and so "there was nothing wrong with her"..... at least after cornering the consultant he admitted he had been testing (or ruling everything else out) for CJD. We (my brother and I) insisted on a autopsy of the brain and spinal cord to confirm our beliefs. It takes 4 - 6 months for results. We buried mum last week and she is now next to her mum and dad, and sister, brother in law, in a little church yard, just where she wanted to be. After a lovely day and excellent service I now feel quite at peace in a funny sort of way.

[BeckyJan]

Hello Sandy. Welcome to Talking Point but it is so sad that you need to be here at all.

I am sorry to hear about your Mum and the incredible speed of her deterioration. I have no experience of this at all and I cannot think of another current member who is facing this same outlook. However hopefully someone will come along with advice or experience.

I have found this Society factsheet which covers rarer forms of dementia and CJD is mentioned. The outlook seems depressing and my heart goes out to you. I just hope it helps to share here.

http://alzheimers.org.uk/site/script...documentID=135

My very best wishes

[chucky]

I have no experience of this either but just wanted to tell you about my dad. Many many years ago, well before he got dementia my dad used to talk about some of the tragedys that have happened over the years. The Hungerford Massacre, the Dunblane shootings, Columbine High School to name a few and he maintained that there was something in the food chain that contributed to the state of these peoples minds which drove them to commit such heinous crimes for no apparent reason. I remember thinking well i wont go mad, i dont eat meat!! Years later when the news broke about people having CJD i thought god my dad may be right, there could be something in the food chain. Not that im saying it drives people to commit such atrocities, but it may well affect the state of mind. I read somewhere recently scientists have found a link between eating offal , (which was the main staple diet of most people before the days of processed meals,) and dementia. I must admit, i think there is a connection somehow but it would be interesting to hear if it has been proven to be true.

[roxane]

Hi Sandy, I feel really sad to see what you have experienced in such a very short time.
How very upsetting to see your Mum deteriorate so very rapidly. Sadly I fear you may not get a diagnosis for some time.
Just over a year ago my husband had his very first seizure which meant he had all the symptoms of CJD. Although the doctors wouldnt exclude it I was told the other symptoms my husband had had had been over a longer period (two years) which is not typical of CJD.
I do fear though there is a time bomb ticking away in society and only so very little is known to the public we may see more and more people in the future with these similar symptoms.
My husband was a herdsman milking cows for over 20 years. I remember him coming home form work in the mornings telling me about the cows loosing their balance, having epileptic fits long before this was recognised by the vets so the poor animal ended up in the food chain.
Worst of all to me my husband also fed the cows the feed (fish and bonemeal) which was thought to have given the cows the disease. It was delivered to the farm as a food supplement in large bags/sacks which was then opened and manually by hand poured over the other dry food the cows were fed twice a day. In my eyes my husband could easily have inhaled this and contained it in his body. No, no evidence, no research will support my thoughts but my husband has had numerous tests and two years on we still have no diagnosis or explanation for his symptoms and change in health.
Sadly my only advise is try to enjoy the good moments you have with your Mum and remember her how she used to be - this is so unfair to you and your Mum and worst of all you will now be focused on the dates of her investigations for a diagnosis but at the end of the day it is most properly not going to make very mush difference.
Take care
Lis

[Jancis]

Hi Im new to this, and my 76 yr old mum is being tested for CJD. She first became unwell in Dec 11 when she was found with a blood clot in her heart but since then she has been on what I call "fast track dementia" In three months she has gone from a fit healthy, full of life independent mum to a small, frail, old lady that cant do any thing for herself except get a glass or spoon to her mouth. She in doubly incontinent, can be aggresive, and can just about get around with help. I had to pound on doctors doors to get her refered back to heart consultant and he couldnt believe the difference in just a short time. We went for a MRI scan and have an EEG in mid May (if we can move her by then). The tests are looking for CJD due to the incrediable pace her dementia has proceeded. If anybody has come across anything like this before please post me as I dont really know how much time we have if reports
of this desease are right.

Hello Sandy,
I don't think I can help other than to report my uncle suffered from a dramatic decline in three short months from Sept 2008 - Dec 2008. From normal to seriously not normal.
I know this isn't any help but was interested in your post and what has happened to your mum.

[nicoise]

Dear Sandy,

Sometime ago there was an interesting thread along the lines of vCJD:

http://forum.alzheimers.org.uk/showt...highlight=vcjd

Might be worth reading for a bit of background information.

Best wishes x

[Bodensee]

Hi Im new to this, and my 76 yr old mum is being tested for CJD. She first became unwell in Dec 11 when she was found with a blood clot in her heart but since then she has been on what I call "fast track dementia" In three months she has gone from a fit healthy, full of life independent mum to a small, frail, old lady that cant do any thing for herself except get a glass or spoon to her mouth. She in doubly incontinent, can be aggresive, and can just about get around with help. I had to pound on doctors doors to get her refered back to heart consultant and he couldnt believe the difference in just a short time. We went for a MRI scan and have an EEG in mid May (if we can move her by then). The tests are looking for CJD due to the incrediable pace her dementia has proceeded. If anybody has come across anything like this before please post me as I dont really know how much time we have if reports of this desease are right.

How is your mum? I hope she has not got human bse, this is a terrible disease, did you ever get the results of the tests she had, I know that there is no blood test currently in use in our GP surgeries or NHS hospitals for this disease, so I am somewhat curious to know what tests they carried out, also did they give you a questionnaire on your mothers lifstyle, vaccines that she may of had and operations also was she ever a blood donor. I think if vCJD is suspected they send the vCJD surveillance people to visit you, did this happen. I really hope she is alright.