Hoping for answers

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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2copies@43
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Hoping for answers

Post by 2copies@43 »

Hello there. I am a 45 year old female with two copies of apoe4. I have been clean and sober for almost 9 years and quit smoking 8 years ago. I'm a vegetarian. I have recently started eating a bit more healthy adding a lot more vegetables into my diet rather than carbs. I have a weakness for baked goods. I take 30 different supplements three times a week 20 of them or for my cognition. I do not exercise as much as I should. I should be honest that I have a junior high school education. I did graduate high school but did not go to a normal high school. I attended a residential girls school for Girls with family problems or girls who were Wayward in some way shape or form. I spent my whole adolescence there. Anyway, I never learned algebra I think when I graduated they just felt bad for me and passed me. I feel ashamed and disclosing this information about myself but I feel I need to be honest if I want honest answers. My birth mother who I have recently found has MS and also has been diagnosed with early dementia she is 58 years old. I have a six-month-old son at home who will not have any copies of apoe4 from me. We do not share the same genetics. It does not make him any less mine. I went to a Cardiologist yesterday because I have calcification that was found in my heart arteries on a recent CAT scan I had of my lungs to follow lung nodules probably from all my years of smoking. The cardiologist seems to know a lot about apoe4. She told me I can change my genetics by simply doing the opposite of what I would usually do. She told me when I watch TV watch it in Spanish and read English subtitles. She told me when I'm driving home to take a new way home everyday. She told me she doesn't know of any evidences supplements can prevent dementia she. She referred me to the Department of genetics she also referred me to the Department of Neuroscience and she told me I should make a case and presented to the National Institute of Health for rare diseases and try to enter a clinical trial. To be completely honest I felt like a science experiment. But all of these things may be necessary. I cannot do these things until I purchase a long-term care policy which I am not ready to do yet financially. My husband and I will have to divorce before I purchase such a plan. I have thought of even darker things like dignitas. I am considering buying a membership. I don't know what to do. I guess I'm just so scared. I'm willing to do whatever I have to do to be around for this kid for longer. I don't really know if I need answers I think I just needed to vent. Any thoughts would be appreciated though. Thank you so much good luck to all of you.
NF52
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Re: Hoping for answers

Post by NF52 »

2copies@43 wrote: Thu Dec 09, 2021 7:33 am Hello there. I am a 45 year old female with two copies of apoe4. I have been clean and sober for almost 9 years and quit smoking 8 years ago. I'm a vegetarian. I have recently started eating a bit more healthy adding a lot more vegetables into my diet rather than carbs...I did graduate high school... I have a six-month-old son at home ... I'm willing to do whatever I have to do to be around for this kid for longer. I don't really know if I need answers I think I just needed to vent. Any thoughts would be appreciated though. Thank you so much good luck to all of you.
You've come back to a great place to vent! I took the liberty of editing down your post to highlight all the great things you have accomplished in spite of lots of trauma as a child. I hope you re-read this version of your and look in the mirror and say " I AM A KIND, SMART, TALENTED, WISE WOMAN, WIFE AND MOTHER WHO HAS A WONDERFUL FUTURE!"

First some kindness for yourself: I spent decades working with students whose families struggled with mental health, social and financial barriers to success, drug and alcohol issues and difficulty managing emotions. Sometimes their children needed options like specialized classes with small teacher-student ratios, counselors on hand, extra time to reach learning targets. Sometimes those included residential placement. These kids were among the most caring, smart, resilient and persistent people I've ever met. They faced very tough issues in their young lives, loved their families and yet were able to find a new path for themselves. The fact that you graduated from such a program should NEVER be a reason to be ashamed of yourself!

And don't worry about not having algebra; you can use your brain in lots of ways that don't involve math, simply by solving problems like "How do I get this adorable 6 month old baby boy to go to sleep?" or "How do I make time for my husband and me and our son to get some exercise together?" You mentioned in the past walking 7 miles a day, which tells me you LIKE to walk and be outsidE. So talk to your husband about either pitching in with child care, or ask a friend or relative for some shared child care (you each get free time once or twice a week by watching each other's child. Even at 6 months your son may be entertained by having another baby or toddler nearby.) See if your community has a location that provides free or low-cost gently used jogging strollers that you and your son can use to get exercise. Time for yourself to re-charge and exercise is going to help you much more than listening to TV in Spanish while sitting.

Your mom's MS is not likely due in any way to her ApoE4 and therefore not likely to be an issue for you. Your family also includes some long-lived grandparents from your posts, so think about those folks--they probably didn't graduate from high school but managed to stay active and engaged with family and friends.

You're a little young for any clinical trials, which tend to focus on people ages 50 or 55 and up. I'm not sure why your doctor recommended you be a case study for the NIH which does not view ApoE 4 as a "rare disease", but does provide billions in funding each year for Alzheimer's research.

I have been in clinical trials and have ApoE 4/4 and normal cognition at age 69--and I wasn't very good at managing my health at 45 ! None of us should think of ourselves as a guinea pig in a science experiment--we should see ourselves as having information that lets us make some choices about what works best for us TODAY. The science on ApoE4 is moving VERY fast--and within 5 years we will have MANY more ways to help people who are still in their 40's. So try to put thoughts of Dignitas aside.

You can be just as resilient as you have been for the last 45 years and in 20+ years you can enjoy his children's much as I enjoy my grandchildren. We ApoE4/4s are rare (only about 2-3% of the population)--that only makes us more valuable and worthy of enjoying life!
4/4 and still an optimist!
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floramaria
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Re: Hoping for answers

Post by floramaria »

2copies@43 wrote: Thu Dec 09, 2021 7:33 am Hello there.
Hello and welcome! I don't know that I have any answers but I do want to tell you that after reading your post, I have tremendous respect for your openness, honesty, resilience and bravery. It takes a lot of courage to open up about your history, your hopes and fears. I hope that you will find helpful information and support in this community to make this journey easier for you.
It is totally understandable that you're feeling scared. As you read more and participate here, you'll find that most of us share a strong belief that we can take steps that will keep us cognitively healthy throughout our lives even though we have the ApoE4 allele like you. And this isn't pie-in- the-sky stuff, but rather evidence based strategies.
Especially at your relatively young age and with the research that has been done on reducing the risks associated with ApoE4 you are in a good position to make changes that will help you to maintain a healthy mind and body. Getting exercise is great for you. Eating healthy whole foods while eliminating sugar and refined carbohydrates is also recommended.
(As someone who takes about a bucketful of supplements everyday, myself, I am biased towards believing that they may be helpful.)
A good place to learn more about ApoE4 and how you can reduce your risk is in our Primer. It is written by a physician member .
There is a lot to digest in there, so pace yourself, and take it a step at a time.
We are here to support you and answer questions as they arise.

Sending you heartfelt best wishes.
floramaria
Functional Medicine Certified Health Coach
IFM/ Bredesen Training in Reversing Cognitive Decline (March 2017)
ReCODE 2.0 Health Coach with Apollo Health
2copies@43
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Re: Hoping for answers

Post by 2copies@43 »

Hello. Thank you for your kind words of support UPS support. That's exactly what I needed to hear. I'm going to work on My diet and exercise. I'm so glad this forum is here. I am hoping the fact that my mother is suffering dementia at 58 Will not mean that I will I will suffer it at an early age as well. I will do whatever it takes. Thank you for taking the time To respond and relax my fears.
Starfish77
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Re: Hoping for answers

Post by Starfish77 »

Hello, I was so impressed with all that you have worked to accomplish. It is great that you are going to work on your diet and exercise to get you in the best shape to keep up with your baby boy. He is fortunate to have a mom with so much determination. I've gotten so much valuable information from this group. I look forward to reading about your progress. I'm a 4/4 woman also. I'm 84.
circular
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Re: Hoping for answers

Post by circular »

2copies@43 wrote: Mon Dec 13, 2021 4:40 am Hello. Thank you for your kind words of support UPS support. That's exactly what I needed to hear. I'm going to work on My diet and exercise. I'm so glad this forum is here. I am hoping the fact that my mother is suffering dementia at 58 Will not mean that I will I will suffer it at an early age as well. I will do whatever it takes. Thank you for taking the time To respond and relax my fears.
Hi 2copies@43! There can be so many different variables from one generation to the next. My grandmother’s AD started in her late 50’s, while my mother’s became apparent at about 81. My mother had some of the preventive strategies well baked into her lifestyle but not others. Her biggest lifestyle gap that I can see was sing sedentary. She was 3/3 but homozygous on another AD risk gene. I got my one ApoE4 from my father as well as the other homozygous risk variants from my mother. I’m hoping to at least delay cognitive decline into my 90s if I can’t prevent it completely. I believe my biggest lifestyle risk factor at present is chronic, extreme stress from 5+ years of elder caregiving within a very high maintenance family (that at least appreciates what I do). You are doing a great job identifying and addressing your risk factors at a young age, and based on your life experience so far I think you are on track to continually improve your cognition :)
ApoE 3/4 > Thanks in advance for any responses made to my posts.
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