Young 4/4 coming to terms with not being invincible

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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CocoNYC28
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Young 4/4 coming to terms with not being invincible

Post by CocoNYC28 »

Hi all,

I have been lurking on here for a bit, coming to terms with my 4/4 status. I am newly 30 and newly 4/4. I have a fraternal twin sister 3/4 and mother who is 3/4 after a group 23andme.

While I’m glad to know now while I have time to adjust my lifestyle, I’m having a difficult time letting go of the fact that this part of myself is out of my control. I have been mostly healthy my entire life. I sleep fitfully 8 hours most nights, exercise 4-5 days a week, have always had a low BMI for my height, travel and explore new things. It never occurred to me in my time on Earth that I might not be “fine” (for lack of a better term). I have found myself painfully awakening from the delusion of my immortality. And it does hurt.

Since I live a pretty on-the-go life in NYC, I do IF almost by default. Going to cut back in dairy (goodbye dear Brie) and sugars ASAP. Looking for any and all tips, emotional and otherwise.

Thanks for listening,
Coco
Flyin66
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Re: Young 4/4 coming to terms with not being invincible

Post by Flyin66 »

CocoNYC28 -

I just posted my intro as well and I'm pretty new to the site, but I am 4/4 as well so I can fully sympathize. Learning my status was definitely a shocker to me, but it's also beneficial I think so corrective changes might help. I am older than yourself, but you have a lot of years ahead of you where research advances may find a cure for AZ. I am optimistic that a cure will be found before my children in their twenties have to be concerned about it.

Rigorous exercise seems to be helpful in many ways; from a lot of the reading heart/vascular improvements help the brain, and also *may* increase BDNF levels for APOE4's . I do intermittent fasting as well; there's a lot of studies about the benefits of IF in certain populations for long lives, etc.

I remember somebody posted here that "genes are not our destiny" - associations do not mean certainty. Many people with APOE4 do not get AZ, and many non-APOE4 persons do get it. While they do not know how to cure AZ, there are some great reads on protective factors like an active lifestyle, increased education, learning other languages, music, etc. The FINGER study (a multi domain intervention) showed that prevention of cognitive decline was possible, even with APOE4's.

Take heart - and hang in there!
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Re: Young 4/4 coming to terms with not being invincible

Post by NF52 »

CocoNYC28 wrote:Hi all, I have been lurking on here for a bit, coming to terms with my 4/4 status. I am newly 30 and newly 4/4. I have a fraternal twin sister 3/4 and mother who is 3/4 after a group 23andme.

While I’m glad to know now while I have time to adjust my lifestyle, I’m having a difficult time letting go of the fact that this part of myself is out of my control...I have found myself painfully awakening from the delusion of my immortality. And it does hurt...Since I live a pretty on-the-go life in NYC, I do IF almost by default. Going to cut back in dairy (goodbye dear Brie) and sugars ASAP. Looking for any and all tips, emotional and otherwise. Coco
Flyin66 wrote:I am 4/4 as well so I can fully sympathize. Learning my status was definitely a shocker to me, but it's also beneficial I think so corrective changes might help. I am older than yourself, but you have a lot of years ahead of you where research advances may find a cure for AZ. I am optimistic that a cure will be found before my children in their twenties have to be concerned about it.
Welcome to two wonderful new 4/4 members!

The warm welcome and support "Flyin66" offered to you Coco is one of the reasons I continue to be part of this site, four years after I was in the "shock and dread" stage of discovery (at age 62) and 2 years after i found this wonderful group. Both of you are proactive, open, eager to learn more about this rare "gift" we have, and yes, finding out that we're not immortal. Trust me, there's no good time to go from feeling "on-the-go" and healthy to "Wait, What???" And yet, most of us come to a sense that we have, in fact been given the opportunity to be more purposeful in what we do with our lives, to decide how much of whose advice to follow inour diets and routines, and to be able to explore or ignore "rabbit holes": our term for fascinating, esoteric, and sometimes preliminary basic research, clinical studies and "N=1" personal experiments on ourselves.

Coco, I think a podcast on "IF: The NYC life-on-the-go Method" is probably a winner waiting to be written. Sounds a lot more fun that "calorie restrict your way to a better brain". And for emotional tips I'd offer this: Be kind to yourself; you are still the same person you were before you got this news. As for tips on what to do: Go slowly; give yourself permission to not have absolutes, unless that's what makes you feel best now. You don't necessarily have to throw out Brie for the rest of your life; some of our members eat dairy and believe it's very helpful.

Since you've been lurking (we love lurkers!) I hope you found Stavia's PRIMER. As an M.D. in family practice in a lovely country that is not the U.S., and someone with ApoE 4/4, and with a history of traumatic brain injury, Stavia is a voice for courage, optimism, persistence and studying the piano (I like the first three and refuse to do any more of the last). She also believes in having a purpose, helping others, and enjoying pastries in Portugal and other wonderful vacation spots. Stavia will help you feel that you have a grounding in ApoE 4, and a source to come back to for advice.
TheHow-To section of the WIKI is a quick reference guide to how to quote people so they see your reply, how to follow a topic by "subscribing", how to search for info, how to send Private Messages (PMs) and most important for long-winded people like me--how to save your drafts so you don't lose your work!
Feel free to jump in on any conversation. Flyin66, I hope you continue to share your secrets for dealing with the news as a parent, and as someone who obviously has done some good searching to find the exciting FINGER (Finnish) study, now being replicated in many countries as the POINTER study.
4/4 and still an optimist!
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Rainbow
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Re: Young 4/4 coming to terms with not being invincible

Post by Rainbow »

Hi Coco and Flyin66,

Welcome and warm wishes. Thanks for sharing a bit about your stories.

I learnt about my 4/4 status earlier this year, and although it's changed so many aspects of my life, I'm ultimately grateful for the knowledge. The ApoE4 forums are a wonderful place to learn more about how to stay healthy as 4/4s. I also find that reading some of the older members' stories can be incredibly inspirational. Sometimes I also write here to help with emotional unloading, which I'm a huge advocate for ;)
CocoNYC28 wrote:Looking for any and all tips, emotional and otherwise.
If I had to offer any kind of advice based on what I've learnt so far, it would be to try and find a community (preferably real-life, not online) where you feel you can be your truest and most authentic self — perhaps a community that's supportive of whatever lifestyle changes you decide to make. I'm working on this myself, and as a grad student, I've found that I get along 500% better with the people I interact with at a nearby yoga studio than with my fellow grad students. I started working a short shift at the yoga studio every Sunday, and I'm hoping to advance from scrubbing toilets to teaching classes of my own one day :D Ultimately, I'm aiming to look back on the rest of my 20s as years of purpose, optimism and treating myself better on an emotional level.

Take it easy.
4/4
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srbogert
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Re: Young 4/4 coming to terms with not being invincible

Post by srbogert »

Hello CocoNYC28!! Welcome to the group.
CocoNYC28 wrote: I have been lurking on here for a bit, coming to terms with my 4/4 status. I am newly 30 and newly 4/4. I have a fraternal twin sister 3/4 and mother who is 3/4 after a group 23andme. .........I’m having a difficult time letting go of the fact that this part of myself is out of my control.
Coming to terms with a 4/4 status can be a challenge, but it sounds like you have a good attitude about it and you're already doing a lot of the lifestyle things right. This group is full of helpful people in positions similar to yours. Please participate, and share support. Even though their genetic risk is lower than yours, your mother and sister may want to join in too. Many of our members are 3/4.
You've already received some nice perspective and advice from other memers. I'd just like to reinforce two points made by NF52. The Primer by Stavia is a great source of information about APOE for people starting out. As you use the site more, the how to guide will help you navigate the site, search more effectively, and create posts more efficiently. Welcome aboard!
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