Unexpectedly found out I am a double APOE4

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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Chicagogirl
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Re: Unexpectedly found out I am a double APOE4

Post by Chicagogirl »

Kaytizate wrote: Thu Jun 02, 2022 5:56 am Hi everyone :)

I’m 35yrs old and decided to pay for the health data to go with a DNA test. There is some history of cancer in my family so I wanted to know if I had a breast cancer risk. I was really shocked when I saw that I have the highest risk of AD because I carry 2 of the APOE4 genes. We don’t have a history of dementia or AD on either side of my family so I didn’t expected to see this at all. It’s thrown me into a bit of a spin & im very upset.
Saw your post about finding out about your 4/4 status in your 30's. I can't imagine what a surprise and impact it had on you especially when you weren't looking for it. I'm not sure how I would have handled it at that age. I suspected I would get Alzheimer's, since both of my parents had dementia. I saw information by the Banner Institute who was acting as a clearing house to identify those who were eligible for clinical trials. I applied and was accepted and put in touch with a trial site. I remember returning with my husband, sitting in a room and hearing I was 4/4. It was a long and quiet trip home. I was overwhelmed at that time. I agreed to enter the trial in my mid-sixties at that time. For a while I told no one. Now, in my early 70's I am on another journey. That trial ended in 2019 and now I am waiting to hear results of blood work for a new trial. I focused on swimming, exercise, volunteering and eating healthier for the past 5 years. I believe you need to embrace being 4/4 and find out what you can and then implement changes that will benefit you. It will help control your feelings. There are a lot of suggestions on this site about diet, protocols, clinical trials, etc. By finding small changes you can control, you will feel better. At my age, I don't think the clinical trial will cure me, but I hope this small part I play may help others like you in the future.
;) 4/4 “Choose to be optimistic. It feels better.” Dalai Lama
Anna
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Re: Unexpectedly found out I am a double APOE4

Post by Anna »

It’s really nice that there is this forum to meet other people with the gene because when I Google APOE4 the statistics are just terrifying. In some ways I’m glad I know because I can try to live a good and healthy life. I’m just not sure how I will shake this terrible feeling though :(
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Hi Kate,

This was exactly my reaction. When I started googling it, the statistics were alarming. And I was, quite frankly, traumatized. But I eventually figured out, as others have said, that the frightening statistics are highly misleading. They do not apply to people who are actively taking steps to prevent cognitive decline. Many factors go into developing AD, and we now know that many of them are within our control. And most of these prevention steps are things we should be doing anyway to maximize healthspan and longevity. I eventually realized that as a curious and motivated individual who already had a fairly healthy lifestyle, I am perfectly capable of impacting my outcome.

It's not that I never dwell on it, but I do feel grateful for the knowledge of my 4/4 status, and I actually enjoy learning abourt brain health (and health in general) as well as the process of "hacking" my health. I think the biggest mistake I made was trying to take on too much, rather than go at a pace that felt comfortable to me while I adjusted to the news. In the beginning, what I probably needed to do instead was nurture myself and get grounded -- go for walks, get a massage, watch some funny movies, PLAY, etc. Eventually, it sunk in that I was letting my fear of the future ruin my present; an itty bitty meditation practice (with Headspace) helped me with this.

Hang in there. It will get better. Start with something manageable.

Anna
~Anna
4/4 but so much more
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TCHC
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Re: Unexpectedly found out I am a double APOE4

Post by TCHC »

Hi Kaytizate
I'll just say, it came as a shock because, "We don’t have a history of dementia or AD", so that would say to me, that it can be prevented! Take hope!
There's lots of great advice on here, just take it one small step at a time, so it doesn't feel overwhelming. If you change 1 tiny habit at a time, in just a few months you'll be looking back and not believing how much you've been able to change.
Good luck with it all and keep coming on here for support and encouragement.
I wish you well
Lindsey
TCHC - Lindsey Byrne - The Cognitive Health Coach - UK
Functional Medicine Certified Health Coach (FMCHC)
Certified Re:CODE 2.0 Health Coach
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