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Terry Pratchett – Living With Alzheimer's

The Red Avenger

Registered User
Feb 13, 2009
2
0
Hi everyone.

I do not have, nor know anybody who has, Alzheimers or Dementia so forgive this little intrusion.

I am a fan of over 20 odd years of the man who is featured in this documentary. I have read with interest and respect what most of you thought of the programme and felt that most praise and criticisms were fair.

However I don't think the programme itself was supposed to be about what its like to have Alzheimers or Dementia but more to do with what happens when you are first diagnosed and just what little is being done about it. As Terry over the last few years has mentioned on his monthly updates on his friend Sandra Kidby's website that his health has not been what it was - it came as an almighty shock to think that what he thought was a mild stroke turned out to be the early signs of the disease - he then went on the same site and announced it. From then on - he was astounded to find just what little help he would get. To him it was like "Oh you have Alzheimers - good luck with that." So as he told us all - he wasn't going out without a fight and the first thing he did was give $1,000,000 to the Alzheimers Trust as well as become a patron and be a "voice" for the Trust. He has since taken a petition to the Prime Minister - opened up a Research Centre - got involved with various "causes" and allowed a BBC Camera Crew to follow him for a year. I understand that his wife Lyn and daughter Rhianna chose not to appear in the programme - As Lyn shuns the limelight anyway - thats understandable - Rhianna is a writer in her own right so perhaps it was wise.

As for his PA Rob - this is a man who has been employed for a number of years and he's overseen a number of Terry's books -so for him - even though their bond is close (Rob goes everywhere) you could see the man was shaken by what had happened to his boss. It would be easy for Rob to walk away - he's not family - he's employed but he is fiercely loyal and I think he will be there for the long haul.

On Terry's discovery of just what is happeneing to him - he has set out to find what is available and what is being done and if he can join in the fight. As he points out - people are living longer and therefore this disease will attack more and more people and we need to stop it getting worse. I think that will be Terry's legacy - that he felt he had to do something. Of course and he would freely admit this that unless it happens to you then you wouldn't know much about it. Then again I doubt some of you would know what it would be like at the age of 10 finding that your brother was paralysed and would never walk again and that your life would be forever changed as well, as happened to me. You see what I mean.

I will admit I knew nothing about Dementia before Terry got PCA. Now that my favourite living author has it I feel I should be educated. I have been, I suspect a lot of his fans have too and perhaps he's gained a new set of admirers though this programme. I have learned a lot (I'm naturally inquisitive anyway) and I have the utmost admiration and respect for anybody who has to deal with this horrible disease.

I think Terry has raised the awareness - I am seeing far more news items on the research and funding - maybe its becuase I'm looking for them or maybe because there is more awareness.

One thing I do know is that I have been made aware and If I am then surely there must be others.

Perhaps in 5 years time he will make another programme and we will see the difference for good or bad.

Anyway, sorry for intruding but just because I don't have or know anybody close with the disease doesn't make me care any less.

Thanks for listening and trying to understand it from a fans perspective. I won't be able to reply until Monday so look forward to more of your comments and or reply's.
...
Wayne
 

Brucie

Registered User
Jan 31, 2004
12,413
0
near London
Anyway, sorry for intruding but just because I don't have or know anybody close with the disease doesn't make me care any less.

Hi Wayne

please don't think your post is an intrusion.

For my part I think it is highly illuminating because it is someone with no connection to dementia who has taken the time and trouble to write it, and to explain.

Thanks for doing that

[please tell me that the name you have chosen does not mean you own a Red Hillman Avenger..... :eek:]
 

The Red Avenger

Registered User
Feb 13, 2009
2
0
Still here (just)

No the username is becuase I am a football fan and and somebody was being "flamed" I chose the name as my team play in red and I wanted to "avenge" their comments. Hence The Red Avenger. It's stuck - I've used it ever since. I don't normally post my real name but I wanted to sound sincere so felt it was right to do so.

Like I said I can't even begin to imagine what you are all going through but Terry has inspired me to educate myself on this.

I would also recommend his last book which I feel was written in the early days of his diagnosis. His story is about a young man who as tribal custom goes through a rite of passage only to find that when he has returned a tsunami has wiped out his whole nation and we belive the loss, confusion and anger he feels is a metaphor for Terry's state of mind at the time. The book is called Nation.

Now I really must be going. :)
...
Wayne
 

TinaT

Registered User
Sep 27, 2006
7,095
0
Bolton
I was very interested to read your contribution to this thread Wayne. You have made some valid points which are from a point of view which I would never otherwise have heard.

I am proud of anyone who sticks their head above the parapet, especially someone so high profile. Dementia has struck the families of one or two other celebrities such as Cliff Richard who have 'gone public' and they too have my gratitude for doing so.

xxTinaT
 

Margarita

Registered User
Feb 17, 2006
10,824
0
london
One thing I do know is that I have been made aware and If I am then surely there must be others.

Now that is so good to read . I also hope so that there must be other like you that also want to learn more about dementia.

Terry did say also that he wanted to take away the stigma away from AZ. From reading your post seem his going to archive that.

Thanks for taking your time sharing your points of view, also BeccaS.
 

JonoF

Registered User
Feb 12, 2009
9
0
Middlesbrough
Hi everyone.

I do not have, nor know anybody who has, Alzheimers or Dementia so forgive this little intrusion.

I am a fan of over 20 odd years of the man who is featured in this documentary. I have read with interest and respect what most of you thought of the programme and felt that most praise and criticisms were fair.

However I don't think the programme itself was supposed to be about what its like to have Alzheimers or Dementia but more to do with what happens when you are first diagnosed and just what little is being done about it. As Terry over the last few years has mentioned on his monthly updates on his friend Sandra Kidby's website that his health has not been what it was - it came as an almighty shock to think that what he thought was a mild stroke turned out to be the early signs of the disease - he then went on the same site and announced it. From then on - he was astounded to find just what little help he would get. To him it was like "Oh you have Alzheimers - good luck with that." So as he told us all - he wasn't going out without a fight and the first thing he did was give $1,000,000 to the Alzheimers Trust as well as become a patron and be a "voice" for the Trust. He has since taken a petition to the Prime Minister - opened up a Research Centre - got involved with various "causes" and allowed a BBC Camera Crew to follow him for a year. I understand that his wife Lyn and daughter Rhianna chose not to appear in the programme - As Lyn shuns the limelight anyway - thats understandable - Rhianna is a writer in her own right so perhaps it was wise.

As for his PA Rob - this is a man who has been employed for a number of years and he's overseen a number of Terry's books -so for him - even though their bond is close (Rob goes everywhere) you could see the man was shaken by what had happened to his boss. It would be easy for Rob to walk away - he's not family - he's employed but he is fiercely loyal and I think he will be there for the long haul.

On Terry's discovery of just what is happeneing to him - he has set out to find what is available and what is being done and if he can join in the fight. As he points out - people are living longer and therefore this disease will attack more and more people and we need to stop it getting worse. I think that will be Terry's legacy - that he felt he had to do something. Of course and he would freely admit this that unless it happens to you then you wouldn't know much about it. Then again I doubt some of you would know what it would be like at the age of 10 finding that your brother was paralysed and would never walk again and that your life would be forever changed as well, as happened to me. You see what I mean.

I will admit I knew nothing about Dementia before Terry got PCA. Now that my favourite living author has it I feel I should be educated. I have been, I suspect a lot of his fans have too and perhaps he's gained a new set of admirers though this programme. I have learned a lot (I'm naturally inquisitive anyway) and I have the utmost admiration and respect for anybody who has to deal with this horrible disease.

I think Terry has raised the awareness - I am seeing far more news items on the research and funding - maybe its becuase I'm looking for them or maybe because there is more awareness.

One thing I do know is that I have been made aware and If I am then surely there must be others.

Perhaps in 5 years time he will make another programme and we will see the difference for good or bad.

Anyway, sorry for intruding but just because I don't have or know anybody close with the disease doesn't make me care any less.

Thanks for listening and trying to understand it from a fans perspective. I won't be able to reply until Monday so look forward to more of your comments and or reply's.
...
Wayne

I'm in the same boat as you mate. Until this program i had little to no knowledge of Alzheimer's, but because i am such a big fan of terry, it has spurred me on to learn and do more. My thread is in the tea room section if you want to learn more.

Jonny
 

daughter

Registered User
Mar 16, 2005
824
0
The Red Avenger said:
"One thing I do know is that I have been made aware and If I am then surely there must be others."
On a thread about another television programme in May 2008 I wrote:
Daughter said:
It looks like this might at last be happening. Many thanks Wayne and Jonny for posting your thoughts and for wanting to find out more.

Best wishes,
 

Margarita

Registered User
Feb 17, 2006
10,824
0
london
Am sure Lynne must remember the disagreement we had :D
For once, this opinion I expressed didn't have anything much to do with my Mum's condition, or only in the most general terms.

I do 'get' your point, but I don't happen to agree with it.

The Internet can only inform & educate the world at large if that world chooses to Google for Alzheimer's Disease or Dementia.
I wish that the contributors to TP were typical of the greater population, as the world would be a better place.
However, it is my opinion that a large percentage of the population would rather not know about it until they have it forced upon them by circumstances.

I fear we must agree to differ :p
 

BeccaS

Registered User
Feb 13, 2009
2
0
London
Just a quick post. Since joining TP last week it's really encouraging to read the posts by Johnny and Wayne. The fact that Terry's courage to talk openly about his early journey has inspired you to learn more and directed your to Talking Point with no family connection is, in a word, fantastic. I've been sharing this with my Mum over the last week, who is my Dad's sole carer, and she has drawn a lot of comfort to see that the awareness is growing. She just wishes my Dad could be of sounder mind to witness the slow changes.
 

daughter

Registered User
Mar 16, 2005
824
0
Someone mentioned Terry, John Suchet and Alzheimers in the office today and I had to suppress a smile! :eek: I was just pleased that it was being talked about openly instead of the usual hushed whispers and quickly changing the subject.
 

Tender Face

Account Closed
Mar 14, 2006
5,379
0
NW England
Parallels?

I, like no doubt millions of others, have watched Jade Goody's 'story' unfold recently ... including the scepticism from people who wonder why she needs a publicist ... not getting into that ....:rolleyes:

What struck me was one news item which reported in the last week there had been a 20% increase in women seeking routine cervical smear tests ..... wowee... what a legacy!!!!! (Which has to leave every sceptic and cynic like me, usually, running for the hills and saying 'thank you' to one brave lady and how many lives she may save as a result of her publicity?)

Whilst programmes and publicity will stir a lot of emotion from a 'captive audience' (such as any programme about dementia for TP members) I wonder what quantative measures there are for the impact of such 'publicity' on the general public? For individuals seeking help, diagnosis or support or awareness ....? For increased fund raising?

OK, we may not be tallking prevention/cure here but does AS have any idea of what direct/postive impact Terry P (or John Suchet, or Fiona Phillips to name the most recent 'celebrities') have on dementia awareness or care by their 'going public'?

Just a thought,

Karen, x
 

Sandy

Registered User
Mar 23, 2005
6,847
0
Impact on TP Membership

Whilst programmes and publicity will stir a lot of emotion from a 'captive audience' (such as any programme about dementia for TP members) I wonder what quantative measures there are for the impact of such 'publicity' on the general public? For individuals seeking help, diagnosis or support or awareness ....? For increased fund raising?

OK, we may not be tallking prevention/cure here but does AS have any idea of what direct/postive impact Terry P (or John Suchet, or Fiona Phillips to name the most recent 'celebrities') have on dementia awareness or care by their 'going public'?

The one thing that I have noticed, is the increase in new members on TP.

Just to get a feel of the difference, I looked at the page that lists TP members and sorted it by join date (most recent date first):

http://www.alzheimers.org.uk/talkingpoint/discuss/memberlist.php?&order=desc&sort=joindate&pp=30&page=1

I sometimes look at this to get a sense of the new members on the board. Also, quite a few new members give detailed descriptions of themselves in their profiles, but don't actually post for some time.

Over the last 7 days, TP has had 72 new members join (excluding the obvious spammers). In the same period a year ago, 36 members joined over the week. That represents an increase of 100% from one year to the next - for that small one-week window.

Some of that increase must be due to the increase profile of dementia in the media generally, along with the efforts of the Alzheimer's Society to promote TP.

Take care,

Sandy
 

embie

Registered User
Apr 27, 2006
10
0
Anything that can be done to raise awareness can only be a good thing so Well done to Terry Pratchett - he's doing an excellent job.

It never ceases to amaze me how people react when i say that my Dad has dementia - so many people just IGNORE I've said it?!! :mad: The more this awful disease is talked about, the better! I agree with someone's earlier comment that the show only showed a sanitised version of AZ but to be fair to Terry, he has only recently been diagnosed. He probably still has no idea how terrible things can / will get. I really feel for his wife and daughter. It is sadly all ahead of them.
 

Norrms

Registered User
Feb 19, 2009
5,388
0
Torquay Devon
Terry Pratchett

What a brave man he is. To bare your soul on national tv takes a great deal of courage, lets hope it highlights and keeps on highlighing this awful disease, Norrms
 

BeckyJan

Registered User
Nov 28, 2005
18,972
0
Derbyshire
Hello:
Not sure if this is the right thread to ask this, but....

Is there any connection/liaison between the Alzheimers Society and The Alzheimers Research Trust?

Thanks Jan
 

KatherineW

Volunteer Moderator
Oct 2, 2007
12,654
0
London
Hi Jan

Alzheimer's Society and Alzheimer's Research Trust are completely separate organisations. However, we have worked in partnership with each other a number of times; a recent example being the Brains for Dementia Research project.

Hope that clarifies things! :)

Katherine
 

BeckyJan

Registered User
Nov 28, 2005
18,972
0
Derbyshire
I was interested as our youngest is planning a sky dive and wants to support Alzheimers. The decision is whether to give it to Alz. Society (which we do regularly anyway) or whether it should go for research.
Thank you Katherine. Jan