A shocking genetic test reveals a 75 per cent Alzheimer's risk. Photo / 123rf
A test showed me that I’m at high risk for the disease. Now I’m doing all I can to optimise my brain health.
To me, the A-word is as bad as the C-word. When my dad was diagnosed with Alzheimer’s at the age of 80, I brushed offevery time he forgot me as a joke. In reality I was broken-hearted, as he was too, by the disease that robbed him of who he had been. Seeing what he went through pushed me to sign up as a volunteer for Alzheimer’s research — which in 2021 showed I, too, was at high risk of developing it.
When I got the call from the clinic, I went into complete shock. I had undergone memory testing that showed I had no issues with cognition, and joked with a friend that I’d signed up to the trial for only the free Pret sandwiches.
I never expected to learn I had two copies of the APOE4 gene. This, I was told, gives me a 75 per cent chance of developing Alzheimer’s, but there’s no way of knowing if and when that might happen.
Three years later, I think I’m still in denial about the result. Every time I forget something, I wonder: “Is this a sign that my memory is starting to go?” I had a stroke in 2022; I honestly think I was so anxious about the result, I burst my own brain.
When I first found out about my APOE4 status (which is genetic), I resolved to change my diet right away, knowing the takeaway and half a bottle of wine I was having most nights couldn’t be doing my health any good. I cut down on alcohol, and now drink a bottle of wine over the course of a week or 10 days; I barely touch take-out food, and have only one good meal a day of meat and rice or veg.
My guilty pleasure is still a blueberry muffin, but my weight has become consistent for the first time in my adult life and no longer fluctuates. Before the test, when I was going through a stressful period I’d stop eating properly, or would resort to fast-food multiple nights a week. I’ve gone from being a larger size 12 or 14 to a size 8-10 for the past two years. I also upped the amount I walk, and in spring will go back to doing two or three miles each day.
While getting physically healthier has been a benefit of doing the test, it has left me with a lot of questions I never imagined needing to answer. It also made me rethink my death; I’ve now decided to donate my brain to science, to try to help any kind of research that prevents the development of this insidious disease. I’d happily let researchers slice a piece of my brain off, just to get us closer to a cure.
I haven’t told my children, aged 37 and 25, why — nor have I told them about the risk I carry.
When I asked the psychologist involved with the research whether I should, he said: “You may as well tell them to look down the chamber of a loaded gun.” Because there’s nothing that can be done once you do know, worrying people isn’t worth it.
I do understand that, though I’m still battling with whether I should tell my siblings who I haven’t been in touch with in recent years, I don’t think I could turn up on their doorstep with news like this.
There were times, after I got the result, that I regretted signing up at all. But now I try to see the information as a positive: if I do start noticing symptoms associated with the condition, I’m in a better place to start taking action. The trial I went on was for medications to treat Alzheimer’s, and I would get back in touch with them if I was worried.
Everything that’s happened in the past few years has made me determined to make the most of things, because I have no idea if and when this condition might hit; it’s really all I can do. The idea of a new blood test to more effectively diagnose the condition makes me delighted, and vaccines now in development being able to treat it are a ray of light at the end of the tunnel.
We’re all living longer, yet so many people are developing brain conditions like this, and anything that can reduce that even by a small percentage has to be worth it. If they ever do make a jab successfully, I’ll be first in line.
As told to Charlotte Lytton
This story originally appeared in The Telegraph UK