Health Check: Registry for Alzheimer's disease
Getting to Alzheimer's before it gets to you -- that's the current thinking as researchers determine who's at risk for developing this memory robbing disease and try and nip it in the bud.
Three women -- two sisters and their cousin -- are "all in" on this one.
"We can trace Alzheimer's all the way back to our great grandmother," said Joanne Crepeau, along with her sister Lori Michaelson, and their first cousin, Linda Kenyon.
"I think it's the worst possible disease you can get. It takes away everything. It takes away who you are.”
For Crepeau and Michaelson, the memory-robbing disease has affected both parents.
"When we found out that they had Alzheimer's or dementia, it was too far gone,” said Michaelson. “Medicines really didn't do anything for them."
That's why the trio signed up for the Rhode Island Alzheimer’s Disease Prevention Registry, a resource for people over 50 who have no signs of memory loss, but want to participate in long-term tracking of the disease, often because they have a family history.
Updates from the registry can provide them with information about disease research and available clinical trials.
The women recently began the screening process to determine risk. Anyone found at risk, would qualify for the early study and a medication that targets the buildup of a protein in the brain believed to be behind Alzheimer's disease, amyloid.
"The expectation is if you can prevent the deposition or the addition of this toxic protein to the brain you could either prevent the symptoms of Alzheimer's completely, or at least slow the rate of memory decline over the long run,” said Dr. Brian Ott, who is the director of the Alzheimer's Disease and Memory Disorders Center at Rhode Island Hospital.
Crepeau has already gone through extensive testing and recently found out she flunked, which is a good thing.
"Believe it or not, I'm as shocked as anybody,” she said, while Kenyon still has two more tests.
"The last one is the pet (scan) in a couple of weeks, so I'll find out at that point,” said Kenyon.
The pet scan shows if you’re at risk.
"I want to flunk, definitely,” said Kenyon. “But I also feel that it's important because it is what it is. If the plaque is there, it's there so I would rather know."
Michaelson, who is almost 56, is too young to participate, but she's ready should they drop the age below 60.
"If we could slow it down that would be great,” she said.
Anyone can sign up for the Rhode Island Alzheimer’s Disease Prevention Registry, whether you have a family history of Alzheimer's or not. Click here to learn more.
You can also sign up for the Brain Health Registry here.