New 4/4 Here in California

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
jan.walker
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New 4/4 Here in California

Postby jan.walker » Tue Jun 09, 2020 4:11 pm

Hi all,

My name is Jan and I live in the San Francisco Bay Area. I am so glad i found you all!

I got my DNA results back a few months ago from the Alzheimers Association and after seeing 4/4 I went under ground for a few months. I am now back up and am ready to tackle this thing! BUT I am so very overwhelmed about what to do, not to do. I just joined this site today and would love to hear from anyone who can help me with suggestions as to how best to begin this life adventure and the needed steps. i would also LOVE to hear about the hope you may have. I am struggling emotionally but ready to do what I need to do.

I can't wait to meet you via zoom, phone or in person.
All the best, Jan

LindaSchill
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Re: New 4/4 Here in California

Postby LindaSchill » Tue Jun 09, 2020 5:46 pm

jan.walker wrote:Hi all,

My name is Jan and I live in the San Francisco Bay Area. I am so glad i found you all!

I got my DNA results back a few months ago from the Alzheimers Association and after seeing 4/4 I went under ground for a few months. I am now back up and am ready to tackle this thing! BUT I am so very overwhelmed about what to do, not to do. I just joined this site today and would love to hear from anyone who can help me with suggestions as to how best to begin this life adventure and the needed steps. i would also LOVE to hear about the hope you may have. I am struggling emotionally but ready to do what I need to do.

I can't wait to meet you via zoom, phone or in person.
All the best, Jan
Greetings and welcome, Jan. We are so glad you joined us today. You are in the right place. You will be offered so much HOPE and support here.

I think your response of going "underground for a few months" is so very common and understandable. Timidity is an emotion that many of our members have experienced when they learn about their ApoE4 status and don't know what to do. Using your strength of courage to tackle this will surely relieve some of the overwhelm. There are a lot of kind hearted and knowledgeable people here willing to give you many HOPEFUL insights. We like to share the good news, "your genes are not your destiny"!
Here are a few tips to help in navigating the website. The Primer is a good place to start. It was written by Stacia a member physician. It is packed full of foundational information. Also, if you would like to introduce yourself and tell us more about yourself, feel free to go to the Our Stories forum. The Wiki section is another great resource.
If you think you need more assistance in bearing your emotions, just let us know we can provide you with resources to connect you with further support. Thank you for trusting us with your burden. We are here for you:)

May you abound in Hope and Peace, Lschill
Caregiver of those Diagnosed with Alzheimer’s
Functional Medicine Certified Health Coach
National Board Certified Health & Wellness Coach
Health Coach Trained in Bredesen Protocol

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floramaria
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Re: New 4/4 Here in California

Postby floramaria » Wed Jun 10, 2020 11:18 am

jan.walker wrote:Hi all,

My name is Jan and I live in the San Francisco Bay Area. I am so glad i found you all!

I got my DNA results back a few months ago from the Alzheimers Association and after seeing 4/4 I went under ground for a few months. I am now back up and am ready to tackle this thing! BUT I am so very overwhelmed about what to do, not to do. I just joined this site today and would love to hear from anyone who can help me with suggestions as to how best to begin this life adventure and the needed steps. i would also LOVE to hear about the hope you may have. I am struggling emotionally but ready to do what I need to do.

I can't wait to meet you via zoom, phone or in person.
All the best, Jan

Hi Jan, Welcome! As Linda said, the Primer is an excellent place to begin. I highly recommend it. It gives a thorough overview of the ApoE 4 allele, including what risks are associated with it and also prioritized steps for reducing those risks. It is a lot of information to absorb. Take it slow and easy.

Another tool you might find useful If you have specific questions is the Search function. You access that with the magnifying glass to the left of your user name. Using the search function, you can see all previous posts related to a word or phrase, which can be very helpful.
Functional Medicine Certified Health Coach
IFM/ Bredesen Training in Reversing Cognitive Decline (March 2017)

NF52
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Re: New 4/4 Here in California

Postby NF52 » Wed Jun 10, 2020 6:11 pm

jan.walker wrote:...
I got my DNA results back a few months ago from the Alzheimers Association and after seeing 4/4 I went under ground for a few months. I am now back up and am ready to tackle this thing! BUT I am so very overwhelmed about what to do, not to do... i would also LOVE to hear about the hope you may have. I am struggling emotionally but ready to do what I need to do.

I can't wait to meet you via zoom, phone or in person.
All the best, Jan
A warm a hug from someone who is your genetic "sister" with ApoE 4/4 also. I feel like we've all been underground for a few months, but in your case it must have been especially disconcerting to learn this news and then not have all the normal routines (and friends) of daily life to help you feel less adrift. Most of us don't end up on Zoom or the phone, or meeting in person. But here's a link to the Nor-Cal "meet-up" group that is waiting for a chance to start up again:
Any NORCAL folks interested in a get together? Feel free to post on their topic page, and you'll be invited to their next get-together!

As for the rest of us, we share our stories, our experiences and yes, our emotional struggles. We don't know what is best for each individual, since our genes are not our destiny and we are so much more than ApoE 4/4!

The best advice is probably to start slowly, give yourself time to try out a few strategies from the Primer based on what you already know about yourself. If you've been giving up sleep for years, then Dr. Stavia (herself ApoE 4/4) has some good advice in Strategy 3 on that. If you nudge your health care provider to get an insulin resistance test (not just glucose), you may find that's an area to target. If you're peri-menopausal or within 5-10 years post-menopausal, you might want to read her Strategy 8 on Supplements, including hormone replacement therapy (That's also a "thread" on the forum with 1000's of posts. Here's an example of how advice may look different for ApoE 4 women, and a reference to a recent book doctor who believes that women's brains need to be studied much more ! Mosconi cites studies that HRT is bad for apoe4 women.

At age 68, I am six years into the journey that you just started and can say with certainty only a few things:

1. You will feel more empowered and confident as you explore and realize how many strengths you have to build on,
2. Your family history or the stories of others are not your story--yours is yet to be written and you are the primary author.
3. Read all studies with a careful eye--studies written more than 10 years ago about ApoE4 probably used referrals to memory clinics. That's like studying normal child development by asking pediatric surgeons about their last 50 cases.
4. ApoE4 is a major focus of research, with development of genetically engineered human pluripotent stem cells from healthy women with ApoE4/4 in their 70's and 80's, and improved targeting of possible prevention drugs in the pipeline to support neurons and synapses specifically in people with APoE 4/4. I have three adult children with ApoE 3/4, and know that their options will be vastly improved to maintain brain health.

The first "study" I saw after getting the news said that the "average age of diagnosis of Alzheimer's is 68 for ApoE 4/4". There are still links that say that. Yet I have learned multiple computer programs (and Zoom!) in the last few years, learned how to navigate in a new state, met new friends, held new positions, lost weight and enjoyed the arrival of two amazing grandchildren. I tested as cognitively normal on a clinical trial as recently as last fall. I'm not an anomaly--we have people on the forum in their late 70's and early 80's who have ApoE 4/4. If you are interested in participating either in patient "registries" in which you might be contacted to see if you're interested in a study recruiting people with ApoE 4, or in observational studies of people over time, let us know and we can provide more info on that.

Feel free to tell us more about your own story, Jan, and to see what makes sense to you, at this moment in your life. We're all learning together--and valuing each new friend on this forum!
4/4 and still an optimist!

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TheresaB
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Re: New 4/4 Here in California

Postby TheresaB » Wed Jun 10, 2020 6:38 pm

Hi Jan. Just thought I’d write to let you know you are not alone. I am a 60 year old 4/4, and there are other 4/4s out there. We live happy, normal lives, you can too. I found out my 4/4 status almost 6 years ago. It wasn’t the best news I was ever given, but I’m okay with it, genes are not destiny. So much of my health future relies on ME, the choices I make, not my 4/4 status. Finding out that I’m 4/4 has been life changing, but in a very positive way, I’m glad I learned my status! I’m now far better poised for a healthful future. It’s better to know and do something now, than to ignore the facts or to be completely ignorant and try to work your way out of a deep hole later. I now have a better understanding of my vulnerabilities and have placed focus on diet, exercise, sleep hygiene, and reducing stress. Am I perfect? No. But I do my best every day and I am comfortable in my jeans,…uh, I mean my genes. :D

There are 4/4s who live healthy, long, mentally clear lives. Alzheimer’s is not determined by APOE status, we’re just at higher risk. If familiar with Dr Dale Bredesen, he has said Alzheimer’s should be a rare disease, and he means that for all genotypes. What he’s saying is that there are many influencers that tip the scale towards Alzheimer’s and everyone has control over most of those influencers. There’s no one thing that causes Alzheimer’s. It’s like a Jenga game, the first move doesn’t destroy the tower, it takes a number of moves taking away critical pieces to aggregate before the tower falls.

Yes, as 4/4s we cannot afford a laissez faire attitude, we must have focus and intention, but it’s not hard. ApoE-ε4/4 has been around since the dawn of man and predominated the vast majority of the history of man. The challenge, in my opinion, is modern life. A lot has changed in our environment, but very little has changed within our biology. Today we are faced with so many things that even our grandparents never faced. Modern life often conflicts with what our genes are comfortable with. I feel if we just try to live a life closer to how our ancestors lived, we help ourselves enormously.

So welcome. You have some learning to do, but we’re here for you. Certainly, nobody has all the answers, if all the answers were known, our purpose here would be unnecessary. But we all have the same goal, we have a lot of collective knowledge, and I’m glad you are here to join us in this journey.
-Theresa
ApoE 4/4


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