Thursday, February 12, 2009

A quick Chat

I watched the second part of Terry Pratchett’s programme about his experience with Alzheimer’s where he travels to the USA, with his faithful PA, Rob, to investigate a controversial new treatment. This claims to show an improvement within minutes.

The treatment had been developed in California where there are more old people than anywhere else in the States. One doctor described the spread of the disease like a tsunami.

Terry is half way through his 37th book and wants to finish it before the disease progresses further. He notices clumsiness and says it’s like his brain is at war with his body. He is being treated with Arocet which is meant to slow down the disease and his latest medical tests show that his results are similar to one he had 4 months earlier - or better - but not worse. He will carry on with the treatment and is cheered by what he regards as good news.

Earlier he had been invited to talk with other sufferers on Radio 5 where one man, who had had it for 7 years said he was able to ‘get over the wall but couldn’t get back again’. Another said he had enjoyed the programme but couldn’t possible say what it was about. Terry was very interested to talk to Becka the daughter of one patient too ill to speak, to give him some idea of how his wife and daughter would be affected

She tearfully admitted that part of her was glad when the disease progressed because it would be over sooner. This may sound heartless but maybe you have to see a loved one in this state to understand. Terry is ‘buoyed up’ by meeting fellow sufferers as they understand, but he himself is very anxious that he shouldn’t be a burden.

In California Terry meets a Professor of Neural Imaging and asks why one would develop Alzheimer’s, to be told it’s just ‘bad luck’. Again he is told there is a cure somewhere on the horizon but as he says ’too late for me.’ He goes to meet the doctor said to have discovered the controversial treatment and tells him he doesn’t know whether to address him as a Saint or Barnum (another very Terry like quip – if he’s going to end up a vegetable he’d like to know which one.)

Terry watches the Admiral – an 88 year old being injected with something which is said to dissolve the excess protein gumming up the brain cells. It is repeated every 2 weeks and the Admiral’s son says it makes a remarkable difference to his father. Apart from the fact that he had a smile on his face afterwards there was little difference to be seen and Terry says the family will see what they want to see – to be kept alive at 88 – kept alive for what?

Terry says he needs some head space to think and goes to do some Tai Chi on the beach. He wonders what his future will hold and goes to see a Care Home for Alzheimer’s and all forms of dementia. His first impression is good as it seems more like a good hotel. He says to the very efficient woman showing him round, that he doesn’t want to seem like the Duke of Edinburgh inspecting and apologises saying it’s a British thing and she says ‘This is California.. Chill!’

There are 5 units graded by the amount of care required and on the higher levels the woman warns there will be a lot of pacing and some agitation. The final level is the hospice stage. Terry says he doesn’t have to worry about the End Game because he won’t be there to worry. He talks to some o f the patients and is quite comfortable with them. Rob meanwhile didn’t want to go in the first place and clearly finds it stressful.

Terry says his wife is resolutely optimistic and encourages him to check on everything and to accept what they cannot change. He says he has to consider what is best for his wife and daughter and at one stage is thankful that his books have earned enough to help so that he would be able to afford such a place, which was nothing like as bad as he had imagined. Rob said it was his idea of Hell.

They go to New York to see the latest in PCA research; he wears another ‘loony hat’ and has his brain monitored whilst he does an experiment. The brain scans show blue and green at the back of his brain where there should be red. He asks if his PCA will turn into full blown Alzheimer’s and is told that it will.

‘How long’ asked Rob

‘Don’t answer that!’ says Terry. ‘We can cope with this and we will!’

Terry says when this jaunt is over he’s like to slow down a bit more. He wants better awareness of the disease and that when people are diagnosed instead of being shown the door they should be shown a path. He himself is determined to live in hope – not fear. What a wonderful, brave gutsy man he is.


Kanani said...

Alzheimer's is such a sad disease. Sounds like his PA Rob is having a more difficult time with Terry's diagnosis. Perhaps Rob needs counseling!

Kate Lord Brown said...

Isn't he just, Pat. The interviews he is doing are inspiring. The big A touches almost as many as the big C - but until now it's been hidden away, shameful. The more daylight on things like this the better - a brave man.

Anonymous said...

I watched the show too - I think it's great how he manages to raise more awareness for this disease. I never heard of PCA before and had no idea it can start in any part of the brain and spread from there. I know what Becka meant though, wanting for it to be over, and I don't think it's heartless at all either.

PI said...

Kanani: they make a great pair - I think they know each other so well and its good that they are honest with each other. I think Rob suffers and will suffer just as the family do. As has been said before - it is a perpetual bereavement.

Kate: he has a dry wit and is totally devoid of self pity.

Wontletlife: I can't do short hand and my hand writing is apalling so I hope it was recogniseable to you.

kenju said...

I want so badly to see those programs! I hope they'll be shown here.

apprentice said...

Great summary Pat. I saw the programme, what he had to say about being shown a path applies to most long term chronic diseases I think. Doctors are good at the physical fixing, where they can, but not so good at "help me to to go forward with this thing"

I liked the way TP shut his assistant down when he was trying to play the old" how long has he got then" card, quite frankly everyone is different and hearing that sort of stats/probability stuff isn't helpful.

We think we may have a firm offer on my MIL's house. Hooray, now to find her a suitable place to stay.

The Preacherman said...

He made me want to cry for him but I don't think he'd want anyone to.

Brave is an understatement.

OldOldLady Of The Hills said...

This really sounds like such a terrific film...I dearly hope we do get to see it here. Maybe PBS....Terry is suc a very brave man, and he is lucky to have Rob, isn't he?

problemchildbride said...

I wish they would show this over here.

My grandpa suffered from Alzheimer's. What a wicked, sad trick of nature it is.

PI said...

Judy:do you have anywhere you can request it?

Anna: thank you for those kind words. I'm always afraid of not doing the programme justice. Good luck with finding the right place for your MIL.

Manic: trying to write everything down is a great help in not getting emotional - there isn't time. And when My brother was ill 'I cried me a river.'

Naomi: yes Rob is way beyond an employee - the whole family must be so thankful for him.

Sam: that must have been awful for you - especially if you were away from home. I'm sure you and Kenju and Naomi could get the programme shown over there - some how. I'll see if Terry has a web- site.

Anonymous said...

More programmes like this need to be made to demystify Alzheimers. Hazel Hawke, the former wife of former AUS Prime Minister Bob Hawke was diagnosed with Alzheimers a few years ago and did a televised interview about it - something that reached a lot of people with otherwise no knowledge of the disease.