By Amanda Thornton MSN, BSN, RN, VA-BC, CIC
Years ago, my mother got a genetic test when they first came out, and she found that she had the genetic “marker” for an “increased risk” for “late onset” Alzheimer’s dementia. Late onset is categorized as the most common form of Alzheimer’s, and the age at which it starts is supposed to be somewhere around age 60-65 and up. For her this was not a surprise, as her father and grandmother both died from the disease.
According to studies, if you have a first degree relative who has the disease of late-onset Alzheimer’s, you have a five fold higher risk of getting the disease yourself (1). Having the marker is apparently not a 100% surety for getting the disease of late Alzheimer’s however (unlike the marker for early onset, which is a whole different ballgame (2)), and other things play a role as well such as diet, activity, smoking, traumatic brain injury, diabetes, and other medical diseases.
A few years after my mother got the genetic test, my daughter then was interested and also got a test. To my surprise, she did NOT have the genetic marker for Alzheimer’s (admittedly I was very happy to see this). This leaves me to wonder- do I personally have the marker since it was not passed down to her??
My fear of getting this disease has been haunting me for a long time. After caring for multiple relatives with the disease (including my mother), I have admitted to myself that a future in which I suffer and die from this and make my own close family and loved ones take care of me is absolutely terrifying. It is one of the reasons I became a community educator for the Alzheimer association, so I could personally face my fears and learn a much as I could about the disease before I ever began to have to deal with it myself. It is a point of personal control over my fears to be able to be as knowledgeable as possible on something I may face personally, and to educate myself in every way so that I can try my hardest to do everything within my power to avoid it. Although I am only 48, I already worry my brain is “going soft”. I feel less sharp than I used to, and every time I forget the least little thing I worry that “this is it, the beginning of the end for me”. Morbid, but true.
So, here I sit with a genetic test in my hands, and I am trying to get up the nerve to follow through with this and not procrastinate anymore. After all, I got this test at Christmastime and it been six months already! Come on Amanda! You can do it!
I can only imagine what it will feel like if I come back with a test that has the marker. Will it feel like I just got a terminal diagnosis? Will I reel under the pressure? Will I cry uncontrollably and freak out over my future? Will I tell my husband to divorce me and run as fast as he can the other way?? 😊Or will I rise to the challenge and work harder than ever to do everything possible to head this off at the pass? I don’t know, but what I do know is that I have to do this. Nay, I WANT to do this. I want to know.
Stay tuned for part two of this blog, where I will tell you the results of my test!!
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