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Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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DKirkham
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Post by DKirkham »

Hello everyone, I am new to this forum. The short story is my Mum had Alzheimers dementia and passed away in 2012 at the age of 58. 10 years prior of soul destroying pain and misdiagnoses of ADHD and Anxiety. We had an autopsy done to make sure that it was Alzheimers dementia and it was. I had done a fair amount of research on the disease as well as the APOE-4 mutation. After getting the results from 23&Me I found out I had the double mutation. I wasn't actually looking for it but there it was. I went to see a genetic counselor at the local University and also met with the geneticist who said I know too much to just speak with the councelor!! I told them that I intended to have a protocol which included: exercise, diet modification, stress reduction, sleep etc.. They all looked at me like I had two heads!! I was told repeatedly that there's nothing you can do. I am now 44 years old and too young for studies and for anyone at the Universities to have an interest in me. This seems a shame as I carry the mutation and possibly some of the other ones too (the geneticist said there's not point in testing for the Presenilin genes) My greatest challenges are stress reduction and community. Community is not forthcoming where I live despite trying hard. I believe strongly that nutrition is one of the biggest factors and we eat a gluten free/dairy free diet. We also tend to be lower grain (there is research on APOE-4 carries being sensitive to grains/carbs) and lot's of good fats, veggies, bone broths etc (Mostly Organic, non-GMO, wild and grass fed). The trouble I'm having right now is feeling alone in all of this. And also the diet is not working very well. I have gallbladder issues (sludge on ultrasound) and the naturopath is trying to thin it out. I still get nausea at times and can't overdo it on the fat. Anymore than around 1 tsp of MCT oil gives me and my son a stomach ache even with food. So frustrating!! I am aware of the Estrogen connection to Alzheimers too and am convinced there is a link. The research I had looked at sees Estrogen as brain fuel and so becomes a problem at menopause. I know the hormonal link is strong but complicated (my Mum had a partial hysterectomy in her late 40's) I am also not seeing anyone who specializes in the disease, mutation etc... I'm at the point now where I think I need guidance. Any input would be greatly appreciated. Kind Regards, Dawn
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Jan
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Post by Jan »

Hello, Dawn, welcome! I'm so glad you found us, and we're happy to be your community. :-) I'm quite certain you have only one head, and it's a wise one to pay such close attention to health and prevention. I am so sorry that you went through so much with your Mum, but all that you learned in that hard time will now help you and, even more importantly, your children. Your focus on exercise, diet, stress and sleep is completely on point. How fortunate that you have a naturopath nearby.
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sylvieJ
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Post by sylvieJ »

Hello Dawn
Thank you for being here and sharing what you have been through. I'm sorry about your mom and what you went through as a family.
As I read your post, I am reminded how quickly this is personal for all of us. You have found a great community here, we are supportive and wanting to share ideas and learn from each other, as best we can.

I suggest that you read over the PRIMER as it is filled with great information that you may find useful.
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I am glad to read you are focusing on your diet and thinking about stress reduction.

There are many experienced members in this community who have a wealth of knowledge and experience. Please reach out and post your questions. We are all here to share and support.

You are definitely thinking about the right things and asking the right questions. Have you tried to find a Functional Medicine MD in your area? That would greatly help you order the right tests to find the "why" and any complex contributors.

Just know Dawn, you are not alone.
most warmly
Sylvie
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DKirkham
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Re: New to Forum

Post by DKirkham »

Thank you Jan and Sylvie for making me feel welcome. Sylvie I have a functional GI doctor but he says he doesn't know anything about Alzheimers! I have to keep trying to find someone who is knowledgeable in this area. My regular Naturapath is not familiar with genetic mutations, methylation or the gene tests in general. Thanks again.
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