Hello - I'm 4/4

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
SunnySideUp
Contributor
Contributor
Posts: 17
Joined: Mon Apr 09, 2018 5:31 pm

Hello - I'm 4/4

Postby SunnySideUp » Wed Apr 11, 2018 5:44 pm

I am a 57yo female that received the dreaded 4/4 status from 23&me on April Fools day. Not funny!

My maternal grandmother had dementia for a decade before passing at 78. My mom showed signs at 69 and passed a week before she turned 78. My dad died at 74 of Non-Hodgkin's Lymphoma. He has a younger brother, now in his early 80's with AD. Losing my young parents hit me hard and I started taking better care of myself. Said goodbye to fast-food, joined a gym, planted a big organic veggie garden and 7 years ago I became a vegetarian.

About that same time, I watched an interview with Suzanne Somers promoting one of her books and I found a wonderful dr. trained in the bio-identical protocol. I felt great but in the last 2 years, while going through menopause, I started having trouble sleeping and in the last year, my mind blanks and I can't retrieve a word - happens almost once a day. I am having a hard time raising my Estradiol - 15.9pg/mL last week. My dr. wants to see it between 30 - 50 but when I increase the cream, I spot. He would like to see me use the patch, but it is 3x the price. He now has me on 1 click in the AM and 1 click before bed and so far so good.

I have 3 brothers and 2 sisters (I'm #5 of 6). Family gatherings the talk inevitably steers to our lack of sleep and forgetting words. We all know AD might be our fate. My oldest brother and I bought the 23&me kit after Christmas. We are both 4/4.

Clicking on the AD risk results button and seeing that outcome was a gut punch. I was actually hoping for one e4, not 2! My husband and I have 2 daughters (ages 21 & 23) so they have at least one e4 from me, which breaks my heart.

Last week, I started the google process and found this wonderful website. Though I think I'll need to take a biology and chemistry class, I was so relieved to read Stavia's introduction and Primer. I immediately dropped sugar and the red wine :( I found Dr. Bredesen's book at the library on Saturday and optimism and hope started to replace the despair I was feeling. The search tool is a great. I have sent my brother all the links, too, and we are discussing how to alert our other 4 siblings.

I am so overcome with emotion and I feel really safe sharing with all of you. Thank you so much for being here!

User avatar
CarrieS
Contributor
Contributor
Posts: 408
Joined: Thu Jun 22, 2017 12:21 pm

Re: Hello - I'm 4/4

Postby CarrieS » Wed Apr 11, 2018 8:43 pm

Welcome SunnySideUp! I love your name and how it reflects your positive attitude. I am so sorry for your family losses and your current struggle with menopause. I'm not an expert on bHRT but it's been a big topic of discussion. You can find a lengthy thread here: viewtopic.php?f=4&t=119&start=580&hilit=bhrt Taking control of your health by growing an organic garden, joining a gym, and saying goodbye to sugar are great steps. Good for you to intuitively go in this direction. It sounds like you've been able to navigate this website with ease by finding the Primer and search functions. The Wiki (found in the top tabs) is also a great resource. This is such an informative and supportive place to share. I invite you to keep sharing and asking questions as they come up. We are glad that you found us.
APOe4/4
Functional Medicine Certified Health Coach
National Board Certified Health & Wellness Coach
Certificate for Reversing Cognitive Decline for Coaches (FMCA)
Certified Fermentationist

NF52
Support Team
Support Team
Posts: 1654
Joined: Tue Oct 25, 2016 9:41 am
Location: Eastern U.S.

Re: Hello - I'm 4/4

Postby NF52 » Wed Apr 11, 2018 9:19 pm

SunnySideUp wrote:I am a 57yo female that received the dreaded 4/4 status from 23&me on April Fools day. Not funny!


A warm welcome to a virtual 4/4 "sister", SunnySideUp!

There is no good day to get that news, but April Fool's Day seems especially harsh. Hey folks at 23&me, you didn't think to embargo the results on Easter and April Fool's Day?
With the name you chose for yourself, I am guessing that even when things look grim, you naturally find some way to see the sunny side. If that's true, and if you're struggling for some rays of sunshine right now, I'll offer a few, both personal and scientific.

Your decision 7 years ago to join a gym, change your diet, and prioritize your health puts you literally years ahead of many of us, who somehow still are holding our own in our 60's. I'm 66 and a 4/4, and finished a second Master's degree at age 58 after "retiring" the year before. Would have been cheaper, and probably more effective to spend those hours at a gym, but we each find what works and is do-able for us, and also brings us joy. Joy in the midst of what seems like dreadful news doesn't come easily early on, but it does come.

There are more and more healthy, cognitively intact people with ApoE 3/4 and 4/4 on this site who are 55 and older--up to at least 80 years "young". Someone who is in his late 70's is an ombudsman for several assisted living facilities. Since you are dealing with the issue of telling your children and siblings, you may want to read his thoughts on telling his family, and the thoughts of others on that topic here. Tell my children or not? or Anna's more recent thread on Thoughts on Disclosure (Who have you told?)
You may also want to consider signing up for Long-Term Care Insurance before you tell your doctor (or ask the Dr. not to put it in your chart. I did, and my Dr. was fine with that.) My husband and I bought LTC insurance through his employer before he retired, and keep the payments up now. He is a 3/3, but we both had mother's with dementia, and it seems like a good investment, even though it is neither feasible nor wanted by everyone.

Reaching for a word once a day doesn't come anywhere close to the definition of mild cognitive impairment. I know, because I am participating in a clinical trial for 4/4's ages 60-75 who are cognitively healthy and we get tested 4x/year on LOTS of skills. "Never has word-retrieval problems" is not one of the benchmarks we have to hit! Normal reductions of about 10% between ages 40-60 in processing speed (whether catching a ball or coming up with a word) have little or nothing to do with difficulty in forming new memories, in planning, organizing, flexible problem-solving, social engagement, etc.

Many people of your parents' and my parents' generation, and their parents, lacked protective factors that are associated with a delayed or prevented diagnosis of either mild cognitive impairment (MCI) or dementia. The women were less likely to have college, or sometimes even HS educations; they were less likely to have careful monitoring of high blood pressure, screening for insulin resistance or even diabetes, control of diabetes if diagnosed, recognition of coronary heart disease, treatment of mental health issues, exposure to clean water and air, especially if living near or working in factories.

The science isn't settled yet on many issues, yet I think those of us who muddled through menopause without hormone replacement therapy, and now which it wasn't too late to get the patch--have mostly still found that once past the late 50's, our thinking became clearer, our brains much less foggy, our sleep much better and our sense of ourselves returned. Here's a link to a long thread (conversation) on HRT that might be of interest to you. Hormone Replacement Therapy E4 Women

Lots of wise and kind people will welcome you. Among them are Health Coaches doing practicums, who are available for some private coaching.

Feel free to keep posting and sharing as you get used to this news, and know that we are all rooting for you, your brother, your other siblings, you husband and kids. They are all lucky to have your love and concern for them.
4/4 and still an optimist!

SunnySideUp
Contributor
Contributor
Posts: 17
Joined: Mon Apr 09, 2018 5:31 pm

Re: Hello - I'm 4/4

Postby SunnySideUp » Sat Apr 14, 2018 2:44 pm

Thank you so much for the kind words of welcome to me and my family - it's very comforting to know there is a big international group of people - affected or not - willing to help each other. I'm sure I will need a health coach to help me understand all the complicated processes. And that joy will come :)

The "tell my children or not" thread is food for thought - both sides have compelling arguments. The stories about taking over care for parents and grandparents that didn't have their affairs in order (creating a significant time investment and added stress for their loved ones) reminded me we need to update our will and create our AMD.

My husband and I joke about "death cleaning." It's based on a Swedish principle of cleaning your house before you die. Though we have a long way to go, we are picky about things that come into the house now and ask ourselves if this is something our kids will want or think is junk? Here's the Time magazine link: http://time.com/4985533/death-cleaning-declutter/

User avatar
Karengo
Contributor
Contributor
Posts: 71
Joined: Sun Jan 14, 2018 10:30 pm
Location: Bay Area, California
Contact:

Re: Hello - I'm 4/4

Postby Karengo » Sat Apr 14, 2018 10:33 pm

SunnySideUp wrote:Last week, I started the google process and found this wonderful website. Though I think I'll need to take a biology and chemistry class, I was so relieved to read Stavia's introduction and Primer. I immediately dropped sugar and the red wine :( I found Dr. Bredesen's book at the library on Saturday and optimism and hope started to replace the despair I was feeling. The search tool is a great. I have sent my brother all the links, too, and we are discussing how to alert our other 4 siblings.
I am so overcome with emotion and I feel really safe sharing with all of you. Thank you so much for being here!

Hello SunnySIdeUp: I'm sending you a warm welcome to our site! We're glad you found our community, too. Thank you for having the courage to share openly with everyone here I'm pleased you feel like this is a really safe space to be. And know that what you have shared here will also have an impact on other community members who come to read your post. Especially when they're also getting over the shock of getting such news and wrestling to come to terms with it. You are a shining example to others of how it's possible you can move through it all and come out the other side. Mind you with a chosen name of "SunnySideUp" I'm not surprised. It says a lot about who you choose to be no matter what life throws at you! Your optimistic attitude shines brightly through your words :D

Looks like you're already up to speed getting around the site having figured out the search tool Wiki and you've been reading Stavia's Primer I love to hear how your perspective is shifting as you say "hope started to replace the despair" and I'm impressed how you've really dived in to take action and already started to make big changes in your life like quitting sugar and red wine!

In case it's helpful here's a link to Bredesen's protocol Wiki-Bredsen

Please ask any questions you may have as you can see there is an amazing group of people here with a wide range of experiences and expertise who are a great support. Feel free to comment whenever you like. We really appreciate you sharing your positive energy - or even if sometimes it may feel like it's a cloudy rather than a sunny day. We're here!
~Karengo
ApoE4 Support Team
FMCA certified Health Coach
"For whatever we lose like a you or a me, it's always ourselves we find in the sea"

Anna
Senior Contributor
Senior Contributor
Posts: 147
Joined: Tue Jan 03, 2017 2:16 pm

Re: Hello - I'm 4/4

Postby Anna » Sun Apr 15, 2018 2:19 pm

Hi SunnySideUp. I love that username! I read your post shortly after you wrote it and am just now getting back to it, which I wanted to make sure I did because much of it resonates (just not the part about receiving my 4/4 news on April Fool's Day. Definitely not funny :(). I am also in my mid 50's and 4/4 with a strong family history of AD (including a grandmother who had a decade of dementia).

SunnySideUp wrote:Clicking on the AD risk results button and seeing that outcome was a gut punch.
That's a good way of describing it. Although there is a bit of a grieving process, it does get better. Take your time letting this sink in. It sounds like you have already made many of the recommended lifestyle changes.

SunnySideUp wrote:My husband and I have 2 daughters (ages 21 & 23) so they have at least one e4 from me, which breaks my heart.
I am in my mid 50's and have two daughters who were almost those exact ages, as well as a younger son, when I found out that I am 4/4. My heart sank, when I almost immediately realized that this means I passed a copy on to each of them (and realized that my parents also each have a copy). I felt so guilty. However, I now believe that my knowing my status gives me the opportunity to slowly teach my kids about brain health and get them started on the right path now. I've been taking this very slowly so as not to overwhelm or scare them, and they have all made some changes. I feel guilty about letting them know, but I would feel guilty if I did not.

I too am working on those hormones. It seems like everything is a moving target. And sleep has been an issue, which I really think can cause the word-retrieving problems, even without AD, but I understand how alarming this "senior moments" can be once we know we have genetic risk.

Keep up the good work, and hang in there!
~Anna
4/4 but so much more


Return to “Our Stories”

Who is online

Users browsing this forum: No registered users and 7 guests

 

 

cron