Newbie still in shock

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
Elliep
Contributor
Contributor
Posts: 6
Joined: Sun Feb 18, 2018 8:40 pm

Newbie still in shock

Post by Elliep »

I am brand new to all of this...I just found out I am E4/E4. I am still in the 'it feels like a death sentence" phase. Most of the technical language sounds greek to me too. I am in the middle of Dr Bredesons book. I can see a tiny bit of light, but i am having and now realize I have had symptoms for a couple of years. I thought it was hormones and age. I am 56.
There is no family history that I am aware of for AD, there is a family history of massive strokes. I am adopted but luckily know everyone on both sides.
It seems like there are lots of things that e4/e4 cant do? Is there a book specially for just this? What is the best book for eating/recipes?
I have been doing Bulletproof for a while, and now it sounds like that may not be a good idea.

I am very grateful for this group and for having the knowledge to get on the front end of this. I must say, I am different than I was last week after finding this out. My whole view of life is different.
User avatar
McGido
Contributor
Contributor
Posts: 70
Joined: Mon Jan 29, 2018 1:22 pm
Location: Vancouver, BC, Canada

Re: Newbie still in shock

Post by McGido »

There is a divide on the bulletproof stuff and saturated fats for E4's in general. I think some of that comes down to monitoring your blood markers and seeing what you can get away with.

Some things you may want to stay away from:

- pasta, rice, potatoes, potato chips, bread, tortillas, pastry, flour, cookies, crackers, cereal, whole grains, wheat, oats, quinoa, rye, rice, barley, buckwheat, spelt

- Peas, sugar snap peas, chick peas, soy, tofu, edamame, beans, pumkin seeds, sunflower seeds, chia seeds, peanuts, cashews

- Cucumbers, zucchini, pumpkins, squashes, melons, eggplant, tomatoes, peppers, goji berries

- Yogurt, greek yogurt, ice cream, frozen yogurts, cheese, ricotta, cottage cheese, kefir, casein protein powders

- Stay away from soy, grapeseed, corn, vegetable oils

- Avoid all grain fed, fish poultry and meats!

If you are diligent with monitoring your markers you will see how much or how little lead way you have with some of these foods. The list I compiled is a recommendation from Dr. Gundry. I'm not sure if there is a consensus on this but I'm sure other forum members will chime in to help out much better than I have!

If you aren't already, I would start a regular exercise regiment as well.
User avatar
SusanJ
Senior Contributor
Senior Contributor
Posts: 3058
Joined: Wed Oct 30, 2013 7:33 am
Location: Western Colorado

Re: Newbie still in shock

Post by SusanJ »

Elliep wrote:My whole view of life is different.
Elliep, welcome and we're glad you're here. Most of us, when we found out, had similar reactions. Do know it gets better with time when you start to understand that there is a lot you can do to lower your risk. We recommend starting with our Primer, which shows what we know and don't know about ApoE4.

Sending hugs from Colorado.
NF52
Support Team
Support Team
Posts: 2772
Joined: Tue Oct 25, 2016 9:41 am
Location: Eastern U.S.

Re: Newbie still in shock

Post by NF52 »

Elliep wrote:I am brand new to all of this...I just found out I am E4/E4. I am still in the 'it feels like a death sentence" phase... now realize I have had symptoms for a couple of years. I thought it was hormones and age. I am 56.
There is no family history that I am aware of for AD, there is a family history of massive strokes ...I must say, I am different than I was last week after finding this out. My whole view of life is different.
A warm hug, Elliep, from a 4/4 "older sister" who is almost 66 and still doing more than okay, In fact, I am happier, less stressed, sleep better, exercise more and weigh less now than I did at 56. I wouldn't be surprised if some of what you've been feeling for a few years was in fact hormones. And while the conventional wisdom has been "no hormone replacement therapy", you may want to go to the "wiki" on HRT using the three vertical dots in the upper right hand corner next to your user name, or through the main page. Some people feel that HRT could be useful specifically for 4/4 women.

More to the point, you have no family history of AD. It's possible your ancestors died early from strokes and would have developed AD had they lived longer; it's also possible that you have inherited other genetic factors that outweigh the risks from ApoE 4/4. Current meta-analyses of 4 large cohorts followed for years suggests that people with ApoE 4/4 have widely variable risks, with the "general" likelihood of a diagnosis of EITHER mild cognitive impairment or dementia by age 85. of between 30%-60%. That means that in some groups, 70% of people with this "high risk" factor never develop dementia. http://journals.plos.org/plosmedicine/a ... ed.1002254

It's also likely that your relatives had risk factors for stroke that are now widely recognized: high blood pressure, carotid artery plaques, high cholesterol, smoking, obesity, diabetes, etc. Rates of deaths from strokes have declined significantly in the U.S. attributed to both lifestyle changes and medical/surgical interventions.

I think a vastly improved understanding of the brain-protective lifestyle interventions analogous to the stroke prevention knowledge we have , can lead most people to have a longer "healthspan". And personally, as someone who is in a clinical trial for healthy ApoE 4/4s, I think we will soon have proven methods to delay, if not prevent, the pre-clinical changes that are associated with Mild Cognitive Impairment and dementia before they take hold. You're at a good age to try some lifestyle interventions and benefit from current research.

My own, admittedly biased advice: Don't sweat thousands of interventions. I haven't thrown out all the foods recommended for the scrap heap by McGido (from Dr. Gundry. He's 31 and planning for the next 70 years. I'm planning for the next 20--I hope-- and relying on my sense of what works for me.
You have enough time to take it slow, remind yourself of everything you have accomplished and weathered so far. And tell yourself that there is joy in the uncertainty; we control some of how we travel and who and what we take on the journey. At the end, we all face a "death sentence", but I don't think it is in your rearview mirror and gaining!
4/4 and still an optimist!
Elliep
Contributor
Contributor
Posts: 6
Joined: Sun Feb 18, 2018 8:40 pm

Re: Newbie still in shock

Post by Elliep »

Thank you so much for your wisdom~ I am a coach by trade and right now the coach needs coaching!!

I will continue to review and learn and stay connected on here. THANK YOU!
Cas
Contributor
Contributor
Posts: 36
Joined: Sun Jan 07, 2018 3:58 pm

Re: Newbie still in shock

Post by Cas »

Hi Elliep,

Welcome to the site and we’re so glad you’re here. As Susan J suggested above the best place to start is with the primer (see link from SusanJ above). Take some time to read through it and I’m sure along with Dr Bredesdon’s book it will help with understanding different types of lifestyle interventions.
This site is a warm and friendly community of people with various experiences and so much knowledge with new information coming out all the time too.
Take care and please use this resource to help with processing this for you.

Catherine
Functional Medicine Coaching Academy Student
Lucy5
Contributor
Contributor
Posts: 480
Joined: Sat Oct 03, 2015 10:52 am
Location: Colorado

Re: Newbie still in shock

Post by Lucy5 »

Welcome Elliep from yet another older 4/4 sister! I’m so glad you found our community because I know you’ll find much support here.

Learning about my 4/4 status at 59 y/o is still fresh in my mind and I understand so well how you must be feeling! I’m hoping you found comfort in NF52’s reassuring post; I couldn’t agree more with what she wrote! There are many examples of 4/4 members aging well by employing lifestyle strategies discussed in our site Primer. Although I’m not proud of it, I can tell you I didn’t get serious about managing my love of sweets & carbs, not to mention saturated, fatty meats until months (...maybe even a year) after I learned about E4. And even then, I moved along slowly. I found sticking with the necessary changes in my diet a struggle, but I finally figured it out. At 65, I’m still doing well.

If I may offer my advice, it is to give yourself time to get comfortable with the strategies suggested here and also in Dr Bredesen’s wonderful book. As others have mentioned, prioritise sleep, relaxation/stress reduction and exercise as you begin adding in diet changes and so on. Please let us know how you’re coming along and always feel free to ask any questions as they come up.
all the best, Lucy
Anna
Senior Contributor
Senior Contributor
Posts: 153
Joined: Tue Jan 03, 2017 2:16 pm

Re: Newbie still in shock

Post by Anna »

Welcome Elliep from another 4/4 in her 50's.
Elliep wrote:I am still in the 'it feels like a death sentence" phase.
Yep, that's exactly how I felt in the beginning. Fortunately, this does get better.
Elliep wrote:I can see a tiny bit of light, but i am having and now realize I have had symptoms for a couple of years.
I had this same realization too, but after discovering and addressing some other health issues (a work in progress), I'm not so sure my symptoms were due to actual cognitive decline.
Elliep wrote:It seems like there are lots of things that e4/e4 cant do?
If you find the list of forbidden things to be too overwhelming (as I did!), I suggest prioritizing the list and tackling the items at your own pace. My first steps were to further reduce sugar and refined carbs, increase vegetables and healthy fats, and get some labs done.
Elliep wrote:I must say, I am different than I was last week after finding this out. My whole view of life is different.
Yes. This! Exactly. :)
~Anna
4/4 but so much more
Elliep
Contributor
Contributor
Posts: 6
Joined: Sun Feb 18, 2018 8:40 pm

Re: Newbie still in shock

Post by Elliep »

Thank you to everyone!

What is the best diet to follow? Is there a Keto book? Dr Bredeson recommends Keto 12/3? and I have seen Dr Gundry mentioned a few times...No CHIA seeds?? or Zucchini? I just made that Chia pudding too..

Seems exercise but not too strenuous?

I have a Therasauna too, please don't tell me that is not ideal?

I have never been on a forum like this so even getting around in here seems a bit daunting.. I will persevere!
User avatar
Sara
Support Team
Support Team
Posts: 253
Joined: Mon Jul 03, 2017 4:44 pm
Location: Between PA and FL
Contact:

Re: Newbie still in shock

Post by Sara »

Hi Elliep... there are lots of resources available. I am reading Ketone Clarity at the present time. I believe Dr. Perlmutter's book Grain Brain and his related cook book are also great books on this topic. There is also a lot of information in the Primer as noted above pertaining to nutrition and diet. Lastly, you can go to advanced search and search on ketone to find posts about this topic. Good luck and congratulations for moving forward on this journey.
Certified ReCODE 2.0 Brain Health Coach, MOCA Certified
MBA, Functional Medicine Certified Health Coach, National Board Certified Health & Wellness Coach
Brain Health Professional - Amen University
Surviving loved one who transitioned with AD
Post Reply