Sir Terry Pratchett

I wanted to watch the TV program:Terry Pratchett’s Jungle Quest – Documentary about orangutan conservation shot on location in Borneo.

It was as much about orangutan conservation as the man himself living with Alzheimer’s Disease (AD).  Because he is lucid, I needed to feed on his words and experiences of the disease.  I read the article below in my quest to know how others experience their own demise.  http://www.dailymail.co.uk/health/article-1070673/Terry-Pratchett-Im-slipping-away-bit-time–I-watch-happen.html  

 There have been several quotes by Terry Pratchett that I can identify with.

“It occurred to me that at one point it was like I had two diseases – one was Alzheimer’s and the other was knowing I had Alzheimer’s.”

This is probably the quote I that strikes me most.   Knowing you have Alzheimer’s is like being secretly give the date of your death and not being able to stop it or control how you will move towards it.  It is like watching yourself in an out of body experience and not being able to intervene.  The main thing is that nobody around you can imagine for one second how devastating it is to understand, and feel your own mental cognitive breakdown.

“There were times when I thought I’d have been much happier not knowing, just accepting that I’d lost brain cells and one day they’d probably grow back or whatever.”

 “You can’t battle it, you can’t be a plucky ‘survivor’. It just steals you from yourself. “

“One of the first things to go was the touch-typing. Kind of a bugger , I thought.”

Pratchett has posterior cortical atrophy (PCA), a rare form of early Alzheimer’s, which affects the back part of the brain responsible for recognising visual symbols.

Reading the words of Terry Pratchett strikes a chord for myself, I too feel the same, and noticed my touch type ability failing.  The difference of him between 18 years, is striking because it highlights the loss of his mind now.

He has talked about the fact that people talking to him would not know or understand what was wrong with him, if anything.  Being coherent does not appear to match Alzheimer ’s disease, but it is the beginning.  It will change.   He ‘came out’ to the world about his diagnosis which contravenes the way we usually treat the disease with embarrassment.  I feel embarrassed about everyone knowing I have Alzheimer’s and will deteriorate over time.  I am not sure why I feel shame about my friends knowing.  There is part of me that wants to say it out loud, and not worry about how they will deal with it.

I had a difficult conversation with my brother the other day which was family related and which left me feeling sad.  Because we live far apart I emailed him and said that ‘I know I sound ok, I am not ok’.   It is hard saying it, and admitting it.

Terry called his AD ‘The End Game’.   I guess this is my end game too now.

Terry continues to write, to tell the stories that imagination has always built inside his head.  I applaud the way he simply gets on with it.  I still have dreams of what I want to do and will endeavour to do them.