Friday, February 06, 2009

A Disease of our Time

Aside

Hats off to Terry Pratchett: a few months back he was diagnosed with Alzheimer’s disease and he thought – ‘who shall I tell?’ Then he decided to tell every one and is doing two programmes on BBC2. A novelist, who has sold 60 million books, he has already donated a million dollars to further research. He is 59 and says he didn’t expect to spend his 60th year like this. His wife and daughter decide not to take part in the programme but Terry has a man Friday – Rob – a PA who types for him and is with him ’every step of the way.’


When Terry was first diagnosed he was bewildered and angry and his rage has helped him to fight the disease. There are variations of Alzheimer’s and Terry had PCA - Posterior Cortical Atrophy which affects his sight. Although an optician would find nothing wrong with his eyes the brain doesn’t send the right message to the eyes so that the patient misses letters and lines.


Throughout the programme we see him doing hours of book signing and visiting research laboratories and the only clear sign that something is amiss is when he has great difficulty putting on a tie (a fellow sufferer who he meets later in the programme suggests he does it by feel rather than sight), and when he is guest of honour at a convention celebrating his books, he stumbles when reading aloud on stage. He says ‘a shadow keeps falling on the book.’ and finally has to stop – which is quite heart rending.


Talking to a specialist he is told that ‘something approaching a cure is on the horizon.’ Many new drugs are going through clinical trials and scientists have found a way to give fruit flies Alzheimer’s and to cure them. The specialist said that the disease was a stripping away of humanity and was a living bereavement for all the family. I can attest to this; over twenty years ago our family was shattered when my brother – in his early fifties, was told he probably had Alzheimer’s. In those days they couldn’t make a definite diagnosis until after death. Now they say a patient probably has the disease ten years before it is recognised.


Terry is eager to try anything to help fight the disease and tries out what he calls a ‘loony helmet’ – a Heath- Robinson contraption which is meant to stimulate the brain cells. It is very uncomfortable to wear so a staunch friend – Frank Bernard, makes a cast of his skull so that a more comfortable one can be made. He also has his amalgam fillings removed. Frank described the disease as ‘a black nemesis that stalks you and said he would be with Terry to the end when ‘Rob and I would take a trip with Terry.’


When Terry goes to meet more advanced Alzheimer patients he feels at home; they know exactly what he is talking about when he describes his brain as having a Clapham Junction day.

The programme ends when Terry hears of good results from alternative treatments in California and next week’s programme will cover that.


Living with Alzheimer’s is on Wednesday BBC2

19 comments:

rosneath said...

i couldn't bear to watch Terry - I amhaving a difficult enough time coping with my father ....

kenju said...

I hope that will be shown over here. How good of him to share his troubles.

PI said...

Rosneath: I am so sorry.

Judy: he has helped the cause so much - quite apart from all the money he had donated. Like all mental health issues - it's almost the illness that dare not speak its name. mental

d.challener roe said...

I heard about Terry's illness a few months back, so when I saw his picture heading up your post I panicked.

I'll have to see if I can find that on over here. I get BBC, but I'm not sure about BBC2.

NetChick sent me...

craziequeen said...

When I was a young nanny, the family granny had steadily worsening Alzheimers. It was incredibly distressing; she didn't recognise her own son, thinking he was his late father; she took the dogs for a walk and came back with empty leads, swearing we never had any dogs; she nearly set fire to the house trying to iron school uniforms and managed to burn Becky's achool shirt; she used to just walk off, a hazardous thing for an elderly lady to do in the countryside; she accused me of stealing her life's savings, which were still in her sewing box, to the extent of trying to call the police because I 'wasn't family'.

The disease made everyone's life so difficult, none more so than her own as she never knew what was going on from day to day and she was miserable.

Netchick sent me back, Pat. A brave subject to broach in your blog.

PI said...

DCRoe: sorry to give you a fright. I deliberately chose one where he looks great because it is so sad when they crumble - not only mentally but physically.

CQ: that paints a very good picture of the disease. The time comes when it is not possible to nurse them at home and sadly there is a rapid deterioration once they are in a nursing home.

rashbre said...

Pratchett has been a very strong ambassador on radio and television even aside from the current series.

I think he is doing much to bring the situation and effects into a wider awareness.

Eryl Shields said...

I'm very sad to hear this, especially as he has such a spark in those eyes. Don't like the books, or the ones that I read at the behest of my husband who is a fan, but the books aren't the man – not all of him anyway.

sablonneuse said...

Thank you so much for writing about this programme. I wanted to watch it but Bear wanted another channel. Maybe next week . . . .

lom said...

My nan had Alzheimers, (dads mom) and now dad is becoming very forget full. What I found scary about the Program was when it pointed out that at first we don’t even notice it, I sit at this key board some days and can’t see a letter, or try 4 or 5 times to spell a word I know how to spell. Then I panic, and I know it’s only because I am not concentrating but it’s always in the back of my mind.

But if a great mind like his and come to this what chance do the rest of us have.

PI said...

Rashbre: long may he continue - in as good shape as he is on the programme.

Eryl: he comes over as a very gutsy gentleman. He won't go quietly and will do for Alzheimer's what Stephen Fry is doing for mental illness. God bless the two of them!

Sandy: I am trying to cease swearing, but really Bear somnetimes...

The Preacherman said...

"I'm Terry Pratchett...well at least I think I am" he says in a preview I saw.

A shining talent.

It's a tragedy for anybody to get Alzheimers but a person with such an incredible imagination and talent?

Doesn't bare thinking about.

Read all his books and loved all his books.

Favourites are the Death ones though. I adore Death.

A cure whilst he can be cured would be magic!

Nea said...

The more information that comes out the better for all of us. I hope they send it here too.

PI said...

Lom: I think everyone who has seen a relative stricken with Alzheimer's has the same fear - I know I do. I have a dictionary by me at all times. You have to remember that it is a perfectly normal sign of the ageing process to make mistakes and forget things. I always feel relief when I spot errors made by much younger cyber friends. MTL is my measure and as long as he is in more or less the same mental strata it's OK - apart from the fact that he started out with a first class brain:)

PI said...

Manic: he's quite a guy isn't he. I'm glad you're a fan. He says he would love it if his generation was the last one to have the fear of Alzzheimer's. I'll drink to that.

Nea:it should be made a world-wide, public health warning.

problemchildbride said...

My grandpa had this wicked disease. I am a huge fan of Pratchett and wish him and his doctors and family every mercy, small and large, in his battle with it.

What's the deal with amalgam fillings? Is that a suspected cause for it?

PI said...

Sam: when it first was diagnosed there were lots of theories flying round - the mercury in tooth fillings - aluminium in cooking pans, lots of air miles, head injuries - my brother had then all. You pays your money and you takes your choice. I believe it ia quite random.

OldOldLady Of The Hills said...

The sounds like such a wonderful and important prigram...I would love to be able to see it....Thanks for writing about it Pat....!

PI said...

Naomi: it's a world wide disease so hopefully it will be a world wide programme - especially as he has fans all over the world.