Waiting for Alzheimer's

ApoE4 Part 2

The fairly new field of research called epigenetics I think has me most spellbound in this process of rooting out Alzheimer’s disease.

According to Dr. David Perlmutter, M.D., in his book, “Grain Brain,” the latest research shows we humans have the ability to “turn off” (or on) certain genes, depending on how we live our lives! Essentially, the lifestyle choices we make and our environments in which we live directly influence how the genes work, including the Alzheimer’s gene, ApoE4. Surprised? So was I.

“One of the hottest areas of research currently gaining momentum is epigenetics, the study of particular sections of your DNA (called ‘marks’) that essentially tell your genes when and how strongly to express themselves,” Perlmutter wrote in “Grain Brain.” “Like conductors of an orchestra, these epigenetic marks are the remote control not only to your health and longevity but also to how you pass your genes on to future generations. Our day-to-day lifestyle choices have a profound effect on the activity of our genes. … We now know that the food choices we make, the stress we experience or avoid, the exercise we get or avoid, the quality of our sleep, and even the relationships we choose actually choreograph to a significant degree which of our genes are active and which remain suppressed.”

This concept is very empowering, and in my opinion, only gives further motivation to live as healthful as possible. (I will go into much greater detail on what is healthy and what isn’t in future posts, but allow me to give you a teaser: “Healthy” whole grains are the opposite of healthy, and “good” fat and cholesterol are our friends and are desperately needed by the body, especially the brain.)

My sister, Jo, 45, said she first started reading about epigenetics when she was pregnant with her first child in 2010.

“I read a lot of pregnancy books and first learned about epigenetics. Though I was reading it in the context of pregnancy (what I did and ate during pregnancy could actually turn on/off genes for the baby), my mind frequently shifted to the possibility that I could ‘turn off’ the Alzheimer’s gene,” she told me. “I started to have a glimpse of hope then that even if I inherited the gene, there may be a possibility that I could ‘turn it off’ if I did all the right things. Unfortunately, I didn’t know what those right things were.”

She continued her research and eventually found “Grain Brain,” in which Perlmutter spells out exactly what those “right things” are.

“I felt I was making gains in improving my overall health, with focus on eliminating inflammation and normalizing blood sugars,” she said. “I was hoping (especially based on the ‘Grain Brain’ book) that, by doing this, I was helping to ‘turn off’ that Alzheimer’s gene. I still was not ultimately convinced, but I was set out to do everything that I could to prevent this horrible disease.”

She passed “Grain Brain” on to me, urging me to read it and later did the same with “The End of Alzheimer’s” by Dr. Dale Bredesen, M.D. Bredesen recommends the same diet, exercise and sleep regime as Perlmutter but goes into much more detail and covers more aspects of a healthy lifestyle in his ReCODE protocol. While Bredesen doesn’t discuss epigenics in his book, his message is the same: You have the power to determine your future based on the lifestyle choices you make. Bredesen named his protocol “ReCODE” as an abbreviation of “Reversal of COgnitive DEcline.” However, I think the name also could be translated to mean, by adopting this protocol and making the right health choices in life, we are “recoding” our genome to promote health and happiness for a very long time to come.

ApoE4 is no longer any scarier to me than ApoE3, which is the most common ApoE variant and has shown to neither increase nor decrease one’s risk for Alzheimer’s. I want to get genetic testing done, not to brace myself for the worst, but to satisfy my curiosity and to know how strictly I need to follow ReCODE. I plan to get the testing done as soon as funds are available and will write about my results when I have them.

So far, four of my nine siblings have undergone genetic testing through 23&Me Their results were one person with two copies of ApoE4 (inherited the gene from both parents), one with one copy (inherited from one parent) and two with zero copies. Bredesen tells readers they can use the 23&Me program but recommends people take those results to some other company to have them professionally read, and he says this for good reason. Not long after receiving the news from 23&Me that he had inherited two copies of ApoE4, my brother received an email from them saying they had been issuing false positives and recommended he be retested. He has no immediate plans to do so, saying he might revisit the idea in a year. Instead he said he is doing his own medical testing and research as part of ReCODE to hopefully prevent Alzheimer’s. He also wanted me to let everyone know that he is “one of the smartest people I know.” (as I roll my eyes….) I hope he will become a regular contributor to this blog. I also plan to use 23&Me to start but hope to then have the results sent for a “second opinion” to ensure accuracy.

My siblings and I now know that having the gene does not mean our fate is sealed, but we’ve noticed that simply letting people know about having it carries a stigma. People look at you differently, my sister-in-law observed after my brother told friends about his 23&Me results.

My siblings also have expressed fear of an employer finding out. What if that employer opts to give someone else the promotion based solely on the information of your gene status, believing you won’t have the mental capacity to handle it, or worse, fears you won’t even be able to do your current job much longer, even though you’ve never been diagnosed with any disease.

Some of my siblings have no desire to be tested, and that’s fine. Deciding whether to have genetic testing done and with whom, if anyone, you share the results are personal decisions and should only be made by following what your gut says is right. I just want to impart two pieces of advice: 1, if you find out you have the gene (or two), know you have the power to determine your own fate and embrace it; and 2, if you find out someone you know has the gene, don’t treat them like they have Alzheimer’s. They likely don’t and may never get it.

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