Terry Pratcher on Alzheimer’s

…it is strange that a disease that attracts so much attention, awe, fear and superstition is so underfunded in treatment and research. We don’t know what causes it, and as far as we know the only way to be sure of not developing it is to die young. Regular exercise and eating sensibly are a good idea, but they don’t come with any guarantees. There is no cure. Researchers are talking about the possibility of a whole palette of treatments or regimes to help those people with dementia to live active and satisfying lives, with the disease kept in reasonably permanent check in very much the same way as treatments now exist for HIV. Not so much a cure therefore as – we hope – a permanent reprieve. We hope it will come quickly, and be affordable.

When my father was in his terminal year, I discussed death with him. I recall very clearly his relief that the cancer that was taking him was at least allowing him “all his marbles”. Dementia in its varied forms is not like cancer. Dad saw the cancer in his pancreas as an invader. But Alzheimer’s is me unwinding, losing trust in myself, a butt of my own jokes and on bad days capable of playing hunt the slipper by myself and losing.

 

read the entire thing. it is well worth it.

via Informa Healthcare – Journal of Mental Health – 19(4):363 – Full Text.

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15 thoughts on “Terry Pratcher on Alzheimer’s

  1. Wow.
    I love that man.
    It’s another part of life we and our love ones have to (or will have to) deal with. Hearing these thoughts on Alzheimer’s is very thought-provoking.

  2. “But Alzheimer’s is me unwinding, losing trust in myself, a butt of my own jokes and on bad days capable of playing hunt the slipper by myself and losing.”

    It’s good to keep a sense of humor when you have an illness that’s both incurable and terminal, but there comes a point in Alzheimer’s where you no longer have the self-awareness to laugh, at yourself or others. It’s why I’d rather be like Pratcher’s father, dying of some other disease but at least with all of my marbles intact, if only for my kids’ sake. No one should have to watch his/her parent wither into a shell of her former self.

  3. …dying of some other disease but at least with all of my marbles intact,

    most of us would take that, if we have the choice. we must remember that Pratchett is quite a rare case, being diagnosed at the early age of 59 and in robust health otherwise. so much different when atop the frailties and illness of age one must also cope with a disintegrating mind.

    I thought of you and your mom when reading this, HG. you write heartbreakingly about what your family is going through – I hope you consider publishing at some point in the future.

  4. My dearest professor had Alzheimer’s.

    An incredibly gentle, learned, and hardworking scholar.
    (Think the Clerk of Oxenford, perhaps.)
    Heartbreaking.

    Every time I come across people simple-mindedly advising the doing of puzzles and the like to “exercise the brain” and avoid dementia, it makes me want to swat them.
    (Part of the Great American “It Must Be Your Own Fault, So That I Can Avoid It Myself” syndrome.)

    And here’s another one.
    (Oh gee, I guess if he’d used his brain more it wouldn’t have happened.)

    • poor gentle scholar – those who loved him must have been devastated.

      ’tis one of Americans deplorable habits: to think that one can control the uncontrollable, to have some say over destiny. rooted in fear.

    • No one’s brain has been better used than Terry Pratchett’s. Or your beloved professor.

      I, too, get annoyed when I hear that advice…”do crossword puzzles”….well, fine, but there comes a point in life when the biology and the chemistry just stop working correctly. It has to be a scary and frustrating way to go…but, like any of the many ways to go, if we can accept it as part of the way things are it may help just a smidgeon. I don’t know.

  5. My grandparents-in-law have Alzheimer’s and dementia. They are well into their 90s but for them, they are 20 again. For the rest of us, we are outside of their world. I’m glad they have each other still. I’m glad we still have Terry Pratchett for now until he can no longer find the slipper.

    • oh, sKatz, that is so sweet and so sad. I hope your grandparents-in-law continue to live in the same realm ’til the end.

    • That is a wonderful way to view the situation, sKZ.Bless your grandparents-in-law on their journey.

      (where’s my slipper?)

    • Elegy for Iris is indeed a moving and beautiful book.

      sorry about your grandfather, Scott. it must have been very difficult to watch.

  6. Never any cures, no money to be made in that. Always ongoing treatments, much more money for drug companies in those. Sad…

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