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.
Tuesday, September 13, 2011
Alzheimer's and Dementia Clinicial Studies--Pay it Forward
A friend of mine sent me a link about Alzheimer's recently, and I was surprised--shocked--horrified--to read that new drugs and other treatments can't find enough volunteers. I can't believe that. We would have signed a deal with the devil himself if he had agreed to give my dad a drug that would have given him a chance at a longer, healthier life.
I don't know how most of these trials work, but I know that the one my dad was part of did NOT make him STOP taking his medicine, it only added new medicine. And when we found out at the end that he was on the placebo, he received the real drug then.
The Alzheimer's Association now has a web page that helps match volunteers with clinical trials. I'm lucky enough to live near New Haven and to have had access to Yale University for my dad's studies, but if you don't live around here that doesn't mean you shouldn't try. There are even trials to sign up for healthy people who don't have AD--I added myself to their data bank.
Being in a clinical trial is about paying it forward. I knew that the drug would probably not help my dad. But down the line, it might have saved someone else from my family's pain. image source I am still accepting donations for my Walk to End Alzheimer's team--the walk is October 2, 2011. If you are not already doing the walk and haven't donated to anyone, I'd appreciate anything. This is my first year having a team and I'd love to show up with a lot of money to prove you don't have to be a corporation to raise funds. Click the to the left (or in my sidebar) to donate.
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.