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01 November 2010 @ 05:16 pm
A Disease of Quiet Desperation  
Terry Pratchett: I'm slipping away a bit at a time... and all I can do is watch it happen

Diagnosed with Alzheimer's--specifically posterior cortical atrophy--author Terry Pratchett writes:

It was my typing and spelling that convinced me the diagnosis was right. They had gone haywire. Other problems I put down to my looming 60th birthday.

I thought no one else had noticed the fumbling with seat belts and the several attempts to get clothing on properly, but my wife and PA were worrying. We still have the occasional Clapham Junction days, now understood and dealt with.

I have written 47 novels in the past 25 years, but now I have to check the spelling of even quite simple words - they just blank on me at random.

He also points out that for a disease that is so feared, research is still chronically under-funded. As the baby boomers age we're going to have an epidemic on our hands.

I've written before about my own memory and attention problems, growing worse every day. They might have another cause but I can empathize with Mr. Pratchett as he watches in shock as words emerge from his typing in garbled form, a skill he once practiced almost effortlessly gradually deteriorating. I, too, grope for the spelling of words I have known for 40 years or more and depend on spelling programs to alert me to misspellings or help me find the correct one. Thank Goddess for Google and the online dictionaries!

It's positively terrifying. (Right there I stumbled over terrifying. Just stopped mid-word, confused about how to proceed.)

The aphasia is getting worse and worse. I grope for names of shows I regularly watch, names of characters, actors, I back up Tivo to see the weather three or four times because I lose my focus and don't take in what I was just watching, I describe household objects to my husband because I forget the names of them. Alternately, other words, nonsensical words at the time, jump forward in their place and tumble out of my mouth, leaving both of us confused. I do this not just once in awhile, as I did 2 or 3 years ago, but on a daily basis now. I leave the stove on so often that I worry I might burn the house down.

Pratchett writes:

When in Paradise Lost Milton’s Satan stood in the pit of hell and raged at heaven, he was merely a trifle miffed compared to how I felt that day. I felt totally alone, with the world receding from me in every direction and you could have used my anger to weld steel.

I am angry too, but perhaps it is a gender-based difference that my fear is much stronger than my anger. It is not considered socially appropriate for a grown man to say to the world: I am terrified. And when you are losing your mind, bit by bit, pride may be all you have left.
Ms. F.goodbadgirl on November 2nd, 2010 01:35 am (UTC)
There is a scientist - funding his own Lyme research - who purchased 10 brain's with alzheimer's from the Harvard Brain Bank. He tested them all for lyme and 7 were positive.

There is much we are not be told. I know what I sound like when I say that, and I also know that I am 34 and wake up calling for my mother some days and I have not lived with her for 16 years and have not called for her in the morning for many years before that.

Mari Adkinsmariadkins on November 2nd, 2010 03:03 am (UTC)
my grandmother (who raised me; i called her mom) passed ten years ago and i still have moments when i think i need to call her.
Tapatitapati on November 2nd, 2010 02:43 pm (UTC)
So either they had Lyme and Alzheimer's or Lyme was causing the symptoms of Alzheimer's and doctors thought it was Alzheimer's.

Hmmm-- http://alzheimers.about.com/od/diagnosisofalzheimers/a/diagnosis.htm

Mari Adkinsmariadkins on November 2nd, 2010 03:02 am (UTC)
we were hoping the increased prozac would help with the adhd. it helped some of my symptoms but not everything. it looks like i'm going to have to talk to heather about adding an adhd-specific drug. preston told me if i felt like that's what i need to do, to do it, and he'd pay whatever it costs.

i'll be 42 in february.

but i still worry about dementia and alzheimer's. both of my mom's grandmother's had alzheimer's, her mother had problems with dementia (she passed at 67 ten years ago), and my mom was diagnosed with early-onset dementia about five or six years ago.
Tapatitapati on November 2nd, 2010 02:46 pm (UTC)

I hope the new med helps!
Mari Adkinsmariadkins on November 2nd, 2010 03:02 pm (UTC)
me too. thanks.
Phatchickladybrigid on November 2nd, 2010 04:46 am (UTC)
As a CNA, I helped care for late stage Alzheimer's patients in a nursing home and it is the one thing I truly fear as I grow older. Fear and anger are understandable, I cannot imagine a more terrifying diagnosis; even cancer can be treatable and doesn't leave it's victims unable to reason, communicate or pray.
Zen hugs and goodthoughts for better days.
Tapatitapati on November 2nd, 2010 02:46 pm (UTC)
No one has diagnosed me yet with any particular cause. All I know is that it's getting worse and worse.

Christinekisekileia on November 2nd, 2010 02:56 pm (UTC)
That must be terrifying. I hope you can at least get a diagnosis and some answers about why this is happening--whether it's because of your past head injuries or something else.
Warrior of Worrywarriorofworry on November 2nd, 2010 11:38 pm (UTC)
I sure understand the anger; I'm having aphasic episodes which have been getting worse and longer. It's like staring at a locked filing cabinet, *knowing* the word or phrase is in there, and not being able to find the key, let alone the file. Since I make a living talking and writing, it's v.v.v. scarey. While writing I can at least look up related concepts and eventually (usually) get to the word, while speaking it's just - can't even describe it.