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Terry Pratchett – Living With Alzheimer's

Skye

Registered User
Aug 29, 2006
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SW Scotland
I can't speak for PCA, but John has PPA, which is similar to PCA except that a different part of the brain is affected.

I have been told that John does not have Alzheimer's, and indeed his progression has been very different -- as is Terry Pratchett's -- so far..........

Perhaps we have to wait for the post mortem........
 

Margarita

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Feb 17, 2006
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london
The issue is, Terry Pratchett has PCA, which is a form of dementia.

He does not have Alzheimer's, which is a different form of dementia.

Now I see your point .

Or, alternatively, is PCA a variant of Alzheimer's?

yes I was wondering that as my mother has those symptoms terry was showing , but with putting clothes on, also doing her shoe lace.

So maybe my mother could also of had PCT , but they did not do such an intense brain Scan like they did with Terry in his early stages , just put in all down to AZ after brain scan , now 7 years on without brain scan they its VD only going by the symptom.
 
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lesmisralbles

Account Closed
Nov 23, 2007
5,543
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You know what

Ron has been told he has lewy body dementia.
Is that because he has been told he has parkinson's?
There are no test's for both these illnesses. It is just a consultant telling you, THEY THINK this might be the problem.

If, and when Ron dies, do I subject his body to a post mortem ?
Yes, I will. If it can stop anyone else getting this, I will. Fumbling in the dark. At the moment, they are all fumbling in the dark.

Barb X & Ron ZZZZ


OR.
Is it just that he is old, 85 this year
 

Sandy

Registered User
Mar 23, 2005
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Hi Margarita,

So maybe my mother could also of had PCT , but they did not do such an intense brain Scan like they did with Terry in his early stages , just put in all down to AZ after brain scan , now 7 years on without brain scan they its VD only going by the symptom.

It is not uncommon for people with AD to experience problems with visual processes as the damage to the brain move to areas associated with vision. This page on the Alzheimer's Society's site does a good job of explaining this:

http://alzheimers.org.uk/site/scripts/documents_info.php?documentID=679&pageNumber=3

Take care,

Sandy
 

ElaineMaul

Registered User
Jan 29, 2005
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But would 'Living with PCA' have caught anyone's attention?

Of course, giving the beast it's correct name is important, but at the stage we are at regarding people's understanding and acceptance of this disease I don't think it's that important just yet.

I do slightly agree that it was a bit difficult working out what the programme's main objective was. However, we are viewing it from the unfortunate perspective of knowing too much!

I saw it just as one person's journey with dementia .... and the beginning of the journey at that! He was only diagnosed a year or so ago ..... can anyone blame him if he doesn't want to 'confront' what his destiny is going to be actually on camera? That really would be brave. However, there is next week's programme.

Also, lots of people would have watched it, that wouldn't normally watch such a programme, just because they were fans of his books. And that has to be a good thing, doesn't it?

Elaine
 

Margarita

Registered User
Feb 17, 2006
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london
Sandy yes that does explain it , but it does not explain why its happening what part of the brain is being effected to have those symptoms .

Then read this .

The term posterior cortical atrophy refers to atrophy or shrinkage of the back (posterior) part of the brain involved with vision
http://www.mayoclinic.org/posterior-cortical-atrophy/symptoms.html

Early symptoms of posterior cortical atrophy generally appear after age 50 and include blurred vision, difficulties reading (particularly following the lines of text while reading), and problems with depth perception. As the disorder progresses, other symptoms evolve such as getting lost while driving or walking in familiar places, misrecognition of familiar faces and objects, and, rarely, visual hallucinations

So the term posterior cortical atrophy is only a term to explain the atrophy or shrinkage of the back (posterior) part of the brain involved with vision.

So does anyone get my point now .
 
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Margarita

Registered User
Feb 17, 2006
10,824
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london
This is a good read

Results: The authors identified 40 PCA cases. Their mean age at symptom onset was 60.5 ± 8.9 years. There were twice as many women as men in the series. The principal types of visual impairment were simultanagnosia (82%) and visual field defect (47.5%). Acalculia, alexia, and anomia were also common. Insight was preserved in almost all (95%) early in the disorder. Neither apoE {epsilon}4 nor tau haplotype frequencies were different from typical Alzheimer disease (AD). Nine patients had died and underwent postmortem examination. Seven autopsied cases had AD pathology but when compared to typical AD, the neurofibrillary tangle (NFT) densities were significantly higher in Brodmann areas 17 and 18 (p < 0.05) and significantly lower in the hippocampus (p < 0.05). Two cases had corticobasal degeneration with maximal involvement of tau positive glial pathology in the posterior parietal lobe and Brodmann areas 17 and 18

http://www.neurology.org/cgi/content/abstract/63/7/1168

Conclusions: PCA is a distinctive dementia syndrome in which the most pronounced pathologic involvement is in the occipitoparietal regions independent of the specific underlying pathology. AD was the most common pathologic cause, but its regional distribution differed from typical AD.
 
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KatsWhiskers

Registered User
Feb 8, 2007
153
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75
Ramsgate - Kent
I watched out of interest as he's been diagnosed with AD.

I was surprised to learn of the different types of AD (affecting different areas of the brain) His 'viewing' cells are affected.

I was surprised how lucid he is. So different to how Mum is - who's 'memory' cells part of the brain is affected.

It's true that every AD sufferer is different - not only is it because of the actual person but which type of AD it is ?!

I admire him for donating so much money to Alzheimers Research - who actually stated that they're working on a cure and hope that it will available in 3 years time. Wouldn't that be wonderful.

Mary x
 

janjan

Registered User
Jan 27, 2006
229
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60
Birmingham
I have read a lot off his books, though the last one i read i struggled with. I enjoy getting completely lost in his world of surreal places and people.
I watched his programme and was not surprised that he wasn't able to highlight the awful plight of so many people and their families, as he doesn't live how many of us do so i don't think he would be able to show what he hasn't seen.
Looking forward to next week, to see if he does look at people at advanced stages, when they are in nursing homes.
 

KatsWhiskers

Registered User
Feb 8, 2007
153
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Ramsgate - Kent
Skye

Hi - hope you're ok ?

The whole programme is based on the fact that Terry Pratchett was diagnosed with 'Alzheimers' some time ago.

I agree with Janjan and everything he says - because so far the programme hasn't even gonwe anywhere near just how hard it is both for the sufferers and for us their carers. I feel sorry for the man yes - but !

I just hopes that he donates the money he's earning for making this film is dontated to the Alzheimers Society in one way or another.


Mary x
 

dimples21

Registered User
Feb 6, 2009
1
0
I understand your frustration, my sister who is 60 is suffering from vascular dementia and we have been going through hell. Was it me or did the programme seem flippant with strange music now and then? It was almost as if dementia was something amusing. There are three of us desparately trying to get help with my sister and the only solution we are offered are more sedatives
 

KatsWhiskers

Registered User
Feb 8, 2007
153
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75
Ramsgate - Kent
Dimples

Hello

Yes you're right - think thats what I was trying to say. Flippant!

The programme was about him because he is who he is - an author - and an eccentric one at that.

I'm so sorry to hear about your sister. Have you tried Social Services - they have all kinds of help to offer.

Seems we read about hundreds of people being diagnosed every day now.

My thoughts are with you

Mary x
 

angela.robinson

Registered User
Dec 27, 2004
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Terry, being in the early stages must be benefical,he has the time and money to to seek out answers and treatments that most of us could not attempt ,we will all benefit from his findings ...he would not be able to do this at a later stage.a lot of comments seem to be "its a rare desease", so not of interest to most of of you, this is the attitude the public use to have of AD !!! WE ARE TRYING TO BRING AWARENESS TO ALL DEMENTIAS.and how rare is rare? there may be many people reg on tp who do not post because they dont seem to share the common symptoms . they may ,like my late husband ,just been told they have AD,and are puzzled. try and look past his personality , what does that matter in the great scheme of things .i watch all and everything that is to do with any form of dementia, ok its too late to be of use to me as far as my dear husbands concerned , but .... one day it may be one of us . i look foward to seeing the next part of the program , and i admire Terry for being so brave , and allowing us into his life of dementia.,
 

KatsWhiskers

Registered User
Feb 8, 2007
153
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Ramsgate - Kent
Angela.Robinson

What I'm trying to say - which is so difficult to put into words is .... that we have seen this dreadful disease at close quarters - you with your husband and me with my Mum - plus thousands of people.
I too watch any programme relating to AD - and to me this programme didn't even scratch the surface and was all treated very lightheartedly. Where are his wife and children and why wouldn't they take part so thjat we could see their side of things and I wonder if they've experienced what we have ? The family have a rough road ahead thats for sure.

Kind regards

Mary x
 

Canadian Joanne

Volunteer Moderator
Apr 8, 2005
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Toronto, Canada
I am unable to view the show through the link because the BBC (bless their scaly little souls) won't let non-UK people view. I'm sure that sooner or later I will see it here.

It's been interesting reading people's reactions to it. Personally, not having seen it, I feel the more documentaries, information etc on TV the better. It's a pity his wife and children aren't on but they may have decided they didn't want to participate. That would be their choice and we should allow them their privacy. I don't think they realize the comfort and solace they could get from people in the same boat.

I'm looking forward to seeing it for myself.
 

jenniferpa

Registered User
Jun 27, 2006
39,446
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I'm in the same position as Joanne (the BBC are silly - they could make a decent amount of money out of letting expats view their shows). I am a tremendous fan of Terry P (one of the few authors where I actually own all his books, some even in hardback(!)). However, I think it's important to note that just because you like a writer's output, it doesn't mean you would like the writer. I've listened to past interviews with him and he's not the sort of person I would warm to in "real life". However, he has a terrible disease now, even if it's an uncommon variant and anything that removes the stigma is a good thing, in my mind. His experience is never going to be typical but then I'll quote Joanne's signature - "when you've seen one person with alzheimer's, you seen one person with alzheimer's". At the very least these sorts of celebrity interviews take a shot across the bows of those slimy individuals (and the ill informed) who claim that you can avoid dementia by using your brain (the use it or lose it crowd) some of whom try to make money out of that concept.

As to his family not participating: not everyone is comfortable in the public eye. I don't really see why one person should be expected to move out of their comfort zone just because their spouse is 1) famous and 2) has a disease. If his wife posted here, I'm sure we'd tell her to do what she thought best for her and her family, not expect her to offer herself up on the altar of "helpful to others".
 

KatsWhiskers

Registered User
Feb 8, 2007
153
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75
Ramsgate - Kent
Sir Terence David John Pratchett OBE

He's an only child; has written numerous humourous fantasy books - so maybe this is why he comes over as he does on TV.

I didn't know that ......
He was appointed Officer of the Order of the British Empire (OBE) "for services to literature" in 1998. Knighted in the 2009 New Year Honours.
In December 2007 he publicly announced that he was suffering from "early-onset Alzheimer's disease" - subsequently making a substantial public donation to the Alzheimer's Research Trust[12], and filming a programme chronicling his experiences with the disease for the BBC.

I send my love to him and his family

Mary x
 

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