Terry Pratchett – Living With Alzheimer's

[Margarita]

I have just seen that link about Posterior Cortical Atrophy, that Karen left, Thanks for that .

That why we need someone who such high profile, its happing to them. They have the courage to show there life with AZ on TV , to bring more awareness to it, because they don't tel you all that on the NHS .

 

[Lanie]

I watched the programme and a few things bought a tear to my eye looking forward to next week. In some ways Terry Prachett is fortunate as he is able to understand he has the disease and is really trying to do something about it. But for many they just can't understand they have it or their diagnosis jsut came to late.

Anything that he does to raise awareness for dementia has got to be a good thing.

Lanie

 

[angela.robinson]

I felt a sense of relief on watching this program,i have always questioned my late husbands diagnosis of Alzhiemers,as it was so different from any one else i knew or had read about,the only explanation from the consultant was that everyone was different!But i had never heard of any one who`s memory did not seem to be affected ,Every word Terry spoke was indicative of my husbands symptoms ,including the hospital saying his problems stemmed from the back of the brain . for those who think terry is having it easy compared to you ,i can say it is very early days for him , the middle and end stages will be every bit as bad as what you are all experiencing.I now know things would not have been any different if i had known about PCA ,but i feel i can now stop searching for answers,but i will follow Terrys story with much interest.

 

[lesmisralbles]

Hello Jennifer

Terry Pratchett may have more money than God and that will make certain aspects of care much easier, but to say he doesn't live in the real world is just being offensive. Anyone who has dementia deserves better than that.

Jennifer

have more money than God
Certain aspect's of care, easier. We, Ron and I have no care, apart from Crossroad's.
He does not live in the real world. No offence intended.
He has money, we do not.
I do not begrudge him his money, I am saying, he who has can, and he who has not, well cannot.
And, dementia.
Well I live every day with it, so do all of us.
How dare you say I have been offensive, how dare you.
Come and look after Ron for 24 hour's.
How dare you be so offensive to us.
I might add why are you doing this ??
I have never offended you.

Barb X & Ron ZZZ

 

[Dearth]

I watched it partly through personal interest, and also because I work in Mental Health (I feel it's important to see these in case I talk to people on my visits who may discuss it).

I'll tell you what I wasn't keen on though - the 'helmet' contraption... when he told the inventor that he hadn't improved, and the chap (rather defensively I thought) commented as to how he hadn't deteriorated either!

To me, that's certainly not validation for the equipment - I'm not saying that it's a load of rubbish, but I find it worrying when someone may in desperation pin their hopes on such as this being a 'cure'.

HAve to say I'm very much looking forward to next week's - particularly for any stuff re: research which I'm always keen to learn more about.

I loved his "Prince Phillip" bit too...

"How long have you been a brain? Oh... that IS a long time!"



Neil.

 

[Sandy]

Hi All,

I thought that this was an excellent programme. It managed a good balance between Terry Pratchett's (another TP) own personal story and insights into things like the diagnostic process and current research.

The one scene that I found particularly moving was when he attended what seemed like a support group for other people with AD. Just to see the relief on his face when he was met with understanding and acceptance by other people who "know where he's coming from". The footage of him having lunch with fellow PCA sufferer Graham Doggett(good article on the two of them in the Alzheimer's Society's Living with Dementia - in PDF format http://www.alzheimers.org.uk/downloads/Living_with_dementia_dec08_low_res) was also very touching.

The fact that TP has this unusual variant of Alzheimer's, PCA, means that he can still express his thoughts and feelings very clearly - and given his writing background - with humour. That is something that other well-known people with dementia haven't been able to do. By the time people like Ronald Reagan, Charlton Heston and Margaret Thatcher had their conditions made public, they were no longer able to talk about it, or felt uncomfortable doing so.

I'm sure that as a result of this programme there were hundreds, if not thousands, of people across the UK last night considering going to their GP's to discuss their concerns. People like Angela, whose husband might have had PCA, will be able to raise more questions about symptoms that don't fit the typical AD picture.

It is a brave man to step out into the spotlight now, not knowing exactly how the future will pan out (notice the clip from next week's programme where his assistant Rob starts to ask "How long ..." and is stopped by TP).

Personally, I can't wait to see next week's episode. And Jennifer, it will probably only be a few days before someone puts the programme up on You Tube so you can get it in the US.

Take care,

Sandy

 

[Helen33]

I was disappointed because it was hard to maintain an interest. I was also very disappointed with my own response because I wanted to be more interested. In the end of turned it off because there was no point watching it just for the sake of it.
I think it is good in that it is making me feel about my own responses.

Am I being ungenerous towards him because he is at such an early stage? Talking Point never treated me like that when Alan was at such an early stage!! I don't think so.

Am I uninterested because the variant of the disease means I cannot relate to it as it is so different from Alan? Talking Point has many carers who are all coping with different variants! I don't think so.

I know I wouldn't have watched it for long had I not become a carer for someone with dementia. I can't imagine the general public gaining much insight from the programme.

Love

 

[Brucie]

My interest was partly because it was made by the person who has the condition, not someone who is caring/observing.

Also, I like to gain as many different views of dementia as I can.

Perhaps now that Jan is past a certain stage, I have time for that, whereas earlier on the trail I would not have done.

 

[Skye]

It puzzled me why the disease was always referred to as Alzheimer's. As I understand it, there are many (over 100, I believe) forms of dementia, and while Alzheimer's is the most common, it's only one form.

PCA is a completely different form of dementia, just as John's PPA is. John could not speak so articulately, or write novels, but he could complete the drawings -- and tie his tie!

OK, what's in a name? Well, call me nitpicking , but I do think it's important to differentiate if we're to get the message across to the general public.

 

[Grannie G]

I might be wrong but I think we on TP are in the minority. among lay people, in that we are now able to accept Dementia as the correct term. and then qualify it.

Alzheimers still seems to be a more acceptable term to the majority, probably because of connotations in the past of senility, `mental homes`, `One Flew over the Cuckoo`s Nest` etc.

When I worked with children with special educational needs, I found parents had preferred `labels` which were more acceptable to society as a whole.

 

[Amber 5]

I watched a lot of the programme but have recorded it so I can watch it all again today sometime. I felt that I didn't relate to Terry P very well at first, nor his symptoms as they are quite different to my mums. The research talk was interesting though.
However, it made me think that here is a man who is obviously suffering inside and trying to put on a brave 'proud' face to the outside world. He seems to be managing extremely well to carry on with getting out and about and obviously would like to do what he can to raise the profile of the disease, which I think he is doing.
The fact that he has a rare type didn't show the sort of behaviours which many partners/carers talk of having to cope with on here - it would be good to have a programme like this but without the celebrity aspect perhaps. I did find it very moving when he met the man and his wife for lunch who is four years down the line and hearing him talking about the difficulties he now has. That must have been worrying for Terry to really see what the future undoubtedly holds for him.
I didn't really warm to TP as a person, apart from when he was showing his vulnerable side. Maybe that's just me.
Best wishes, Gill x

 

[Skye]

Yes, I agree, it took me a while to accept the term 'dementia'.

But surely if the BBC is presenting the Terry Pratchett story as a documentary, they should get the terminology right, if only for the sake of people with Alzheimer's who do not have Terry's articulacy.

Gill, I didn't warm to him as a person either, but I also find his books unreadable. He has a massive fan base though, and I'm sure they all watched simply because it was TP.

All the more reason to get it right.

I did find the research part interesting though, particularly the researcher who insisted that they were nearly there, and there would be a cure in 5/10 years. He was very convincing.

I hope he's right!

 

[Grannie G]

I suppose as long as the Alzheimers Society is called the Alzheimers Society there will be no change.

 

[Helen33]

I must admit that I do agree with Hazel in this instance because of my personal experience. At diagnosis I was told that Alan didn't have Alzheimers but FTD and that there was nothing that could be done. I was left with that I was ignorant and took that to mean there was no help whatsoever for Alan and myself.

It was quite a long time later that a colleague asked whether I'd contacted the Alzheimer's Society. I said "no because Alan doesn't have Alzheimers". She suggested I rang them anyway. It was from there that I discovered that there was a lot that could, and should, be done in terms of support, information and additional care.

I will never forget being in the position of believing that there was nothing available to us because he didn't have Alzheimers. I mention this all the time to the lady from the AZ Soc and at the carers group because I think the name should be changed to something more inclusive.

Love

 

[Amber 5]

I agree, the number of people I speak to who ask me about Dementia/Alzheimers and what is the difference etc. etc. - I'm not sure I know myself - its all so fuzzy - I keep hearing of types I never knew existed. My interest has only begun since my mum has progressed and I feel I am slowly learning more and more, but still feel quite ignorant. So I guess that programmes like this will do their bit to raise the profile and get people talking/thinking!
Gill x

 

[Skye]

Gill, there's a very good factsheet (updated since I last read it) on other forms of dementia:

http://www.alzheimers.org.uk/factsheet/442

It doesn't describe them all, PCA and PPA are not included, but with over 100 forms, it would be impossible to cover everything.

I'll be interested to see how TP's dementia progresses, as I've never encountered it before.

 

[Sandy]

Hi All,

I think it must be difficult when someone is diagnosed with a different form of dementia to link that back to support from the Alzheimer's Society. I suppose that is part of educating health professionals and other support workers to give out information about sources of support. Perhaps the new memory clinic plan will make that easier.

I also just wanted to point out that the Society has tried to tackle this gap by adding the tag line to their logo:

Leading the fight against dementia

It's subtle, but it does try to get the message across.

Take care,

Sandy

 

[sumosumo]

disappointed

I found Terry's documentary to be rather self-absorbant rather than 'useful' to anyone. Here's a man with lots of money who is able to see specialists at the drop of a hat and pay for any number of experiments all around the world. I don't blame him at all for this; he has the money and we'd all do the same in that situation - I'm sure.

Like many of you say, he did NOT portray day to day living. Yes, he's in the early stages of his illness but what message did it give having those friends dressed as Greeks?! They had no relevance to an informative documentary on dementia. I wonder what the objective of the program was?

We all know; it's the practicalities and emotional hurdles that are hell. I am just back this morning from my three week visit to mum. No outside carers - S Services say "she does not meeth criteria and that they 'need to build rapport' with her. They've had THREE YEARS. She is 'cared' for by sitting in her brother in laws house each day (who is nearly ninety and he has a completely blind wife who also suffers dementia who lives at home too). The three of them form their 'unit'. I have two children and work - I do my best but it NEVER feels enough. Permanent state of guilt and worry.

Anyway, today's new problem following the visit: Mum is not flushing the toilet any more. Any tips welcome!! Toilet backed up and the stench unbearable. Her bedroom stunk (not bathed for at least three years). I could go on .... you all know that

At least Fiona Philips began to show some of the reality of dementia. What was Terry's programme about!! It was annoying and served no purpose from what I could see. Rob was nice though

I am often asked 'how is mum'. I tell them!! "Oh she throws her toilet paper in the bath now and doesn't flush!". "She hasn't bathed for years". I made the decision that mum's dignity evaporated many years ago. She is dirty - the illness making her this way - not her choice. I think is is healthy and morally right that Joe Public KNOW what this illness is about. I refuse not to tell them. People should know. I still feel that there is so much of this illness we just don't discuss with Joe Public. Why? Society is awkward with these details but I think we owe it to our loved ones to make everyone aware what this illness REALLY is about. By covering it up we will not get the recognition is deserves over time. I feel my mother is being left to rot as she cannot speak up for herself. There is a similarity with young abused children.


Thanks for listening

 

[said]

It was quite a long time later that a colleague asked whether I'd contacted the Alzheimer's Society. I said "no because Alan doesn't have Alzheimers". She suggested I rang them anyway. It was from there that I discovered that there was a lot that could, and should, be done in terms of support, information and additional care.

I will never forget being in the position of believing that there was nothing available to us because he didn't have Alzheimers. I mention this all the time to the lady from the AZ Soc and at the carers group because I think the name should be changed to something more inclusive.

Love

Hi Helen

Although Alzheimer's is the most prevalent form of dementia and most familiar to the wider public, it is only one of a large number of dementias and we are acutely aware that some people don't find our support and information services because of our name.

The name change option was looked at when we embarked on re-branding late in 2007 and the decision to not change our name was made as it was felt any change would lead to even more confusion and loss of awareness. As Sandy has pointed out we did change our strapline to 'leading the fight against dementia'.

The charity is committed to fighting the stigma attached to the word 'dementia', most recently through the 'Out of the Shadows' report. You can see video of Terry Pratchett talking about the issue here.

We in the web team also invest considerable time and effort to ensure that alzheimers.org.uk features highly in search engines for all types of dementia not just Alzheimer's disease.

But we do recognise the problem. Glad you found us in the end.

Said
(New Media Manager)
Alzheimer's Society

 

[Stewart]

My wife, aged 55, has PCA and is probably about 4 years ahead of Terry Pratchett. The consultant has told us that, although it starts at the back of the brain, it ends up affecting the brain in much the same way as the more “normal” forms of Alzheimer’s/dementia.

Jan was diagnosed 2 years ago after she started to under perform in her job as Head of Science at an independent school (they were very unsympathetic!).

Just 2 years later Jan cannot do anything that requires coordination or visio spatial ability (e.g. setting a table), she can just about make a cup of tea although the strength and temperature can be variable. Dressing is becoming very difficult and she is losing her language fluency. Physically, however, she is very fit and young looking for her age.

I felt that something was missing from the programme last night. Maybe I was hoping that it would shock the viewers into understanding what a terrible disease this is and the struggle that sufferers and carers are facing, often with little support.

Perhaps because Terry is at such an early stage in the journey and is able to manage most day to day tasks, the programme probably gave the impression to the average viewer that Alzheimer’s is not so bad. It is horrific! I found that the recent programme by Fiona Phillips conveyed this better.

I admire Terry Pratchett, particularly his fighting spirit, and100% support everything he is doing to raise the awareness of Alzheimer’s and find a cure. I hope, however, that the next programme will show what the moderate and severe forms are like and the challenges and fears that the carers and sufferers face. We have to prepare for the future.

Stewart