HOME TEST FOR ALZHEIMERS
This morning, I received an update from the Alzheimer’s Association
“On Thursday, April 6, the U.S. Food and Drug Administration (FDA) announced that they have approved at-home genetic testing through the 23andMe Personal Genome Service Genetic Health Risk (GHR) test, which tests for genes associated with risk of 10 diseases or conditions, including late-onset Alzheimer’s. People will be able to send 23andMe a saliva sample and receive their genetic data back through the mail.”
You can find and read the entire article here -> Alzheimer’s Association blog.
I understand it can be unsettling to learn about a family member with Alzheimer’s, even more so when it pertains to yourself. Some folks want the information and others do not. Would you want to know?
I’m not certain I would have wanted that information had it been available to me before my Mom battled the disease.
I knew Mom wasn’t the only one in our family to have Alzheimer’s. Though otherwise healthy, My Mom, Grandmother and Uncle all died with Alzheimer’s. I felt fairly certain I’d be next with or without a test after my Mom passed away with Alzheimer’s.
Now, Nine years after my Mom’s passing, I no longer wonder or guess. I know why my thoughts sometimes disappear in seconds. I’m not surprised to learn that I’ve forgotten an entire conversation from the evening before.
I often forget where I put the paperwork hubby told me to store in a safe place. And when he asks if I’ve taken my regimen of pills every morning, I always answer, “uh huh.” But my head is struggling to remember until I search my pill bottle and count.
The kind thing for me is that I do understand what’s happening. I don’t cry with confusion, pain or anger as my Mother did. We had no idea what was wrong with her in the beginning.
I skipped those days of not knowing what was wrong and for that I’m grateful, I gave up my car keys a year ago, (not so willingly) but I knew it had to be done, and why, and was not nearly as heart broken as my mother had been.
Of course the day will come when I forget that I’m forgetting. I won’t be aware, but my family will because we’ve done this before.
My daughter lives with us and we have many long talks about my future. She helps me now and accepts what I want in my future. I’m glad I can make long term choices and have someone be certain that my wishes are kept. Hubby isn’t nearly as accepting of parts of my future, and doesn’t like hearing any of it.
It’s a tough disease to deal with. It’s hard to make choices now, that shouldn’t come till the end of your life. Yet, it has to be done and I’m glad I can do it and save the burden from my loved ones.
Through this new genetic testing,
How do you feel about this? Let us know and share your thoughts…
~Sandy
Hi. I have two concerns about this testing. The first concern is outlined in the full article written by the Alz.org (the article you posted a link for in your blog): http://blog.alz.org/fda-approves-at-home-test-for-an-alzheimer-disease-risk-gene-what-you-need-to-know/ . If you read that article through, they tell you hat this test is unreliable because it does not test for the determinate gene. It only tests for one gene that increases risk (possibly), but also states that as many people without that gene can and do develop Alzheimer’s and many with the gene never do. 23andme is not telling the whole story. Please read the article you posted and see that this testing is not accurate. My second concern is that if you were tested and shown to have this gene that 23andme tests for, your health insurance might not be renewed, according to articles on the internet. I have not verified this but it is reason enough nor to rely on a test that isn’t accurate in the first place. The Alz.org article states that the best way o find out is to go to a geneticist and discuss options. My mom had Alzheimer’s and I am afraid of the risk, but I won’t rely on 23andme for knowledge. It is just not accurate enough. I appreciate your blog and thank you for linking the full article from Alz.org as well.
Yes, I would take an Alzheimer test. I am a senior woman who lives alone and family is distant. The result of such a test could help me plan for a future with professionals before I lose decision making capacity.
Dee,
I agree with you. That is similar to my feelings. There are things I’d prefer happen whether I’m aware or not. It’s much easier for me to talk about it now, and I’m not nearly as afraid as my Mom was, mostly because neither of us knew what would happen. Knowledge is everything!
Sandy
Sandy, thank you so much for this information. I do want to know, and will have this test done. My Dad is in late stage ALZ, as is his sister and one of their maternal first cousins is in early stage. My Dad’s mother preceded him in death, due to ALZ. Information is power and, for me, there will be a comfort in knowing, either way.
Sharon, you have a great understanding and knowledge of Alzheimer’s. I feel as you do. I’d rather know, as I do, so I can help myself for as long as I’m able. My daughter has come to live with me already and she is so encouraging. It’s wonderful to talk to someone who is not afraid for me but understands how I feel about it all.
Sandy