Research has shown that Alzheimer’s patients in clinical trials -- whether they receive the drug or the placebo -- do better. Often, Alzheimer's disease progresses more slowly in those in a clinical trial than it does in those who are not in a clinical trial. If you volunteer you will help yourself and science.....By Carol Blackwell
Alzheimer's Reading Room
Most of us would do anything to save our children if they were in danger -— run in front of a train (at least I think I would do that!), donate a kidney, run into a burning building, etc.
And yet, there is a critical shortage of people with Alzheimer’s to volunteer for clinical trials. Without involvement in clinical trials, research won’t go forward and, if that happens, there will be no cure for this awful, horrible, disease.
So, you may be asking, what does this have to do with the children? The sad fact is your children are more likely to develop this disease if you have it.
When my husband, Bob, was first diagnosed with Alzheimer’s we did consider a clinical trial. We did some research, but the website we looked at was so overwhelming, we didn’t go any farther with it.
However, Bob’s cousin, a doctor, and another cousin encouraged him to enroll in a study at Emory University on the Chastain family. His grandmother was a Chastain. The study is trying to find the Alzheimer’s gene that has affected a large number of Chastain descendants. His grandmother and aunt had Alzheimer’s and his mother has lived with it for over 20 years.
Bob and I traveled to Atlanta probably six months after he was diagnosed and talked with Dr. Levy and others there. The experience was a wonderful one for Bob. He felt the doctor really cared about him as a person, and they had a good bit in common (both had gone to University of Michigan).
Bob was very encouraged about dealing with the disease after the visit and his outlook definitely improved.
The people at Emory had the names of some trials at Georgetown University Hospital -— about an hour from us—and they gave us contact names and phone numbers. After a series of discussions with Georgetown, Bob went through all the tests and was accepted in a Wyeth vaccine clinical trial. It has been a wonderful experience for him. He said he didn’t mind being a ‘guinea pig.’ (his term).
Volunteering for a clinical trial is a way of doing something and not sitting around. I feel as though I can make some difference this way, to do something that is good. The people at Georgetown ‘treat me like a king'. I will do anything to try and make sure my children don’t get this disease. Anything.
I am happy he made the decision. I am lucky in that I can work my schedule around his appointments since I have to go with him each time. Sometimes -—when he is close to an injection -— we go every other week and stay between 1 and 3 hours. Mostly, our visits occur every two or three months.
When we go, I pack a ‘backpack’ of newspapers and magazines for him, and needlework for me, and we sit back and relax.
Well, to be totally honest, I sit back and relax and Bob cheerfully handles his part (MRIs, blood work, temperature checks, blood pressure, etc). He plays guessing games with the nurses about his blood pressure -— it is disgustingly low for someone in their late 60’s-— 120/70.
We select lunch bags, munch away, and he enjoys the parade of doctors and nurses in and out of the room.(can you guess he is an extrovert?)
Bob has been in the study since December of 2007 -— he is now in an extended open label study. The open label extension means he is getting the drug they are testing, regardless of what he had previously.
Prior to the open label extension, the trial is blinded so no one knows whether they are receiving the drug or a placebo. We know he has the real thing now. I can honestly say he will be disappointed when the clinical trial ends next year.
Research has shown that Alzheimer’s patients in clinical trials -— whether they have the placebo or not -— do better and the disease progresses more slowly than those who are not in clinical trials. If you volunteer you will help yourself and science.
Please, please volunteer to participate in a clinical trial. You may be in one where the outcome isn’t the cure, but you could be in the one that makes all the difference and will prevent your children -— and everyone else’s—from getting this disease.
Alzheimer’s is one inheritance you don’t want your children to have.
Below is a link to the NIH Alzheimer’s Disease and Education and Referral Center (ADEAR) where you can search for clinical trials in your area. Please -— save the children -— join a clinical trial. All of us will thank you.
Carol Blackwell lives in Northern Virginia with her husband Bob. Bob was diagnosed with Alzheimer’s in 2006. Carol is a part time leadership coach and instructor. Both Carol and Bob are active advocates in the fight against Alzheimer's disease. Bob and Carol also blog on the USA Today website.
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Original content Carol Blackwell, the Alzheimer's Reading Room