Just got my 23andMe

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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oliviaevans
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Just got my 23andMe

Post by oliviaevans »

Hi all, Im a 31 year old female in MA, USA. I did the 23andMe testing for ancestry and genetics and came up with increased risk for LOAD (1 copy APOE4). Ironically, I am a dementia consultant and have worked in dementia caregiver education/support for 10 years. I have read 2 of Dale Bredesen’s books and am trying to just wrap my head around all of this. I have AD and VD in my family on my dad’s side. But even having done this professionally for a decade, I still feel… lost? Empty? Shocked? I know 1 copy is less risky than 2, but wow no one prepares you for reading the result. I’m glad this group exists, but it breaks my heart that we need its existence.
abalboa
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Re: Just got my 23andMe

Post by abalboa »

oliviaevans wrote: Mon Apr 24, 2023 5:25 pm Hi all, Im a 31 year old female in MA, USA. I did the 23andMe testing for ancestry and genetics and came up with increased risk for LOAD (1 copy APOE4). Ironically, I am a dementia consultant and have worked in dementia caregiver education/support for 10 years. I have read 2 of Dale Bredesen’s books and am trying to just wrap my head around all of this. I have AD and VD in my family on my dad’s side. But even having done this professionally for a decade, I still feel… lost? Empty? Shocked? I know 1 copy is less risky than 2, but wow no one prepares you for reading the result. I’m glad this group exists, but it breaks my heart that we need its existence.
Welcome oliviaevans,
Thank you for joining our site and posting in the forum! I am happy you have shared your story and how you are feeling about the knowledge of your status. I think many of us can relate that even being knowledgeable and having experience with dementia doesn't lessen the impact. This site can offer some much needed empathy and understanding as many of us have been in just that spot. But this community also offers reinforcement that genes do not control our destiny. There is so much we know now that your parents may not have known about diet and lifestyle choices that reduce the risks of developing AD and we have many members in their 50s, 60s and 70s that do not have symptoms and are living full lives. And I admire your desire to understand more about the science and options in reading Dr. Bredesen's books!

As a Support Team Intern, I can share several tools & resources to help you get the most out of your experience if you would like to explore the site in more detail. The Primer is a detailed and informative resource written by a practicing M.D. with ApoE4/4. It includes information about the biochemistry of the ApoE4 gene and offers a variety of research-based prevention strategies.

Some helpful tips to navigate the site include the How-To Guide. It includes topics such as navigating the forum, private messaging, and searching. One great tip is using the quote (") button when replying to a post. Using the button will automatically alert the member of your response.

If you are interested in learning more about other members check out Our Stories.

Again, I am so glad you joined our forum. I look forward to hearing from you in the future. Please feel free to reach out anytime.

Warmly,
Angie
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Re: Just got my 23andMe

Post by NF52 »

oliviaevans wrote: Mon Apr 24, 2023 5:25 pm Hi all, Im a 31 year old female in MA, USA. I did the 23andMe testing for ancestry and genetics and came up with increased risk for LOAD (1 copy APOE4). Ironically, I am a dementia consultant and have worked in dementia caregiver education/support for 10 years. I have read 2 of Dale Bredesen’s books and am trying to just wrap my head around all of this. I have AD and VD in my family on my dad’s side. But even having done this professionally for a decade, I still feel… lost? Empty? Shocked? I know 1 copy is less risky than 2, but wow no one prepares you for reading the result. I’m glad this group exists, but it breaks my heart that we need its existence.
Hi Olivia,

Our intern Angie has already assured you that many of us also struggled with the initial news of not just having something in our family's history--realizing that we also carry a risk that is real, but not predictable in any way that feels "actionable".

I hope I can build on her wise advice. I am a 71 year old female, who a dozen years ago lived for a year in your lovely state of Massachusetts while I earned my third Master's degree at a college that was a dream to attend many years before. (And got the same high GPA I had earned as a 21 year old.) If I had known them that I had two copies of ApoE4, maybe I would have convinced myself not to try, since I also have vascular dementia and AD on my mother's side and my father died of cardiac arrest at age 67.

So not knowing might be a blessing, but learning when I was 62 that I was ApoE 4/4 allowed me to reduce my cardiac risk through diet and exercise, learn about the science of ApoE4, which is moving very fast, join clinical trials and patient registries, and meet wonderful people my age and older who also are healthy, happy and active with two copies of our "high risk" gene.

Your grandparents and great-grandparents probably had few of the cognitive resilience factors you almost certainly have: strong education, continued learning and occupational challenge in adulthood, social engagement with diverse groups who expand your emotional connections beyond a narrow circle of family and neighborhood, a healthy diet, regular exercise, no tobacco use, minimal to moderate alcohol use, no serious brain injuries, little exposure to serious water and air pollution [Side note: I'm old enough to remember when Lake Erie caught fire from pollutants and as a young adult knew that lakes and rivers near my home had dioxin in them. All before the EPA made a difference in our communities.]

Given your age and your wonderful career, I would recommend two things: Dr. Lisa Mosconi's The XX Brain and this link to "Well-Being with Dementia: Help, Hope and Inspiration" by people living well with adult cognitive impairments.

If you work with caregivers of those in late-stage dementia, you may not have had the opportunities I have had to meet more than half a dozen people living well with MCI and mild AD, serving on boards, auditing classes at local colleges, participating in clinical trials, traveling to see family and new places and open about the need to design a world in which we do not equate Alzheimer's at any stage with people in the very last stages. One of them is Phil Gutis, a former New York Times reporter, who you can read here: https://www.beingpatient.com/phil-gutis ... s-journal/

You and my 3 adult children, all slightly older than you, have the same ApoE 3/4 risk. I am confident all four of you will create amazing, wonderful lives for many decades to come!

Nancy
4/4 and still an optimist!
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Re: Just got my 23andMe

Post by TCHC »

Hi Olivia

You've had 2 great responses already, so I won't repeat, but to add 1 more point. You are young. You have lots of time to prevent this. You are reading up on all of this, so you know what you need to do. Don't try to do it all at once! Take 1 small step at a time, prioritising as you see fit; what's easy, what looks like it'll make a big difference to you, and as you take those small steps, after a while you'll look back and realise how far you've come.
So many people with 2 x ApoE4 never get dementia (and people with no ApoE4 sometimes do - it's not a deterministic gene) so you've got lots of time to live your best life to a ripe old, healthy, happy, productive age, eating well, moving, learning, relaxing, enjoying life, avoiding those environmental toxins as best you can, etc.

Good luck, keep us in the loop on your journey.
Lindsey
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oliviaevans
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Re: Just got my 23andMe

Post by oliviaevans »

Thank you for the reassuring responses everyone!!
abalboa
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Re: Just got my 23andMe

Post by abalboa »

oliviaevans wrote: Tue May 02, 2023 8:49 am Thank you for the reassuring responses everyone!!
Glad to see some great perspectives being shared with you! Please keep us updated on your journey... (if you feel comfortable) and don't hesitate to ask any and all questions or just share your thoughts. There is a lot of knowledge and support to be gained and shared here..
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