As I posted back in October, Terry Pratchett, one of my favorite authors, has early onset AD. Here's an update. He was diagnosed last December with a rare form of early-onset Alzheimer's, or posterior cortical atrophy, in which areas at the back of the brain begin to shrink and shrivel."I have a rare variant," he says."I don't understand much about it but apparently it means I'm going to be me for longer. Apparently if you're going to have Alzheimer's it's a good one to have. That's lucky, then..." The hugely successful author - incredibly he has sold around 55 million books in 33 languages and is the second most read author in the UK after JK Rowling - recently donated £500,000 to the Alzheimer's Research Trust....He was, he says, furious with the diagnosis. "Apparently I reacted to this situation in a reasonably typical way, with a sense of loss and abandonment with an incoherent, or perhaps I should say, violently coherent fury that made the Miltonic Lucifer's rage against Heaven seem a bit miffed by comparison. It's a nasty disease, surrounded by shadows and small, largely unseen tragedies."It seems pretty obvious to me that if you're out meeting people, breathing in lungfuls of fresh air, getting your blood coursing around your body, you're going to be a lot better prepared to deal with something like Alzheimer's than if you just stay at home watching TV and moping," he says. "You can't out-run the train but you can run and, who knows, if you can keep running for long enough, someone might find a way of blowing up the train." Please, god, blow up the train. "People don't know what to say, unless they have had it in the family. (screenprint)
10 MILLION "Baby Boomers" will get Alzheimer's. That's twice as many as have it now. Half a million new cases each year by 2010. I know Patty will weigh in with her spiel on how we have to focus on defeating AD now...before it goes those 10 million....and 30 or 50 million people join our ranks, blogging and reading about what this hell on earth is like. By 2010, projections say there will be 500,000 new cases of the mind-wasting disease each year, and nearly one million new cases annually by 2050, the report estimates.... Right now, there are 10 million caregivers providing care (to the 5.2 million Americans afflicted with AD), many of them family members, at enormous personal cost...(A)n expanded circle of people ... are affected by this disease. It's not just the person with the disease. It's not just their immediate caregiver -- it's the children and grandchildren.... Medicare currently spends more than three times as much money on people with Alzheimer's and other dementias than it does for the average Medicare recipient. In 2005, Medicare spent $91 billion on people with Alzheimer's and other dementias. By 2010, that number is expected to climb to $160 billion, and by 2015, to $189 billion annually... What else can I even say? You're here reading this; you can imagine a world with even more Alzheimer's in it. An ugly world, one I don't want to know. (screenprint) In other news, I have a new job! Full time, great pay, as a Production Editor at an office only a couple of miles from the nursing home where my father died. I could have visited him every day if I had had this job six months ago.
I'm not sure why this is such a startling find. If both your parents have Alzheimer's, your risk of getting it goes way up. To me, this is a no-brainer. I thought it was generally accepted that there was some sort of genetic component. If both your parents have Alzheimer's disease, you probably are more much likely than other people to get it.... 42% of children of dual-AD parents who had reached age 70 had been diagnosed with AD as part of this study, "greater than you would expect in the general population in that age group". But it doesn't saw WHAT you should expect. In the general population, risk for the disease begins to rise at about age 65, with the number of people developing the disease doubling every five years beyond that.... (There is a) roughly one in 10 chance that the average person will develop the disease. But is that 10% chance at age 65, doubling every five years? Or is that over a lifetime? This article is very poorly written. To those of us with Alzheimer's parents or loved ones, I don't think any of this comes as a surprise. (screenprint)
My father's 1253-day journey through Alzheimer's Disease (AD) and my feelings about it. Now my aunt appears to have dementia, so this is her chronicle as well. All material is copyrighted by Gevera Bert Piedmont (except where noted and where quoted from other sources); please do not repost without permission.
"The cost of Alzheimer's? Everything you ever owned, everything you ever thought you would get, and things you never even thought about."
"It's a long, slow slide into oblivion, with no brakes."
"If this was a paper journal, the ink would be running with tears."
"Imagine a really beautiful, perfect statue, left out in the wind and rain for centuries, to be worn away, until it’s only retained the shape of a person, not any of the individuality. That’s what Alzheimer’s did to my father. It wore him away, all the sharp edges and crisp points that made him Bob, who loved his family and his pets and his raspberry bushes, and turned him into a fearful person with a vague and confused stare."
"It's a nasty disease, surrounded by shadows and small, largely unseen tragedies."--Terry Pratchett
This is a reminder that Alzheimer's disease affects real people, real families. My dad wasn't a monster, just a man whose brain was slowly eaten by a terrible disease.