Gina99 Intro

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
Gina99
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Gina99 Intro

Post by Gina99 »

My Story
I was 'lurking' around the 23andme apoe express forum and found out last Sunday that I was a apoe ¾ My sister who is 14 years older than me (I am 55), was the reason I wanted to check out my health. She was diagnosed with AD 2 years ago. I am trying to get her to take the test as well. Also, my mother is 96 and has very little dementia and in shocking good health. Also, trying to get my sister's daughter tested, we would be a great research group. LOL. Since then, I have been educating myself, trying to change eating habits, etc. I am hoping it is not fate and it is changeable and we do not have the same genetics. I know we don't have the same lifestyle and I have a bigger head (lol). I think I have more reserve. My sister is famous for poor diet and no exercise. Popcorn and ice cream were dinner before. She can't find her words and her short term memory is bad. Her personality is exaggerated; but I honestly think she is happy. So I am here, reading and learning and hoping to be that percent that doesn't evolve into AD.
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Julie G
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Re: Gina99 Intro

Post by Julie G »

Hi Gina! You've got some mixed genes there. The fact that your Mom is doing so well at 96 (!!!) bodes really well for you. Do you know her APOE status? You didn't mention your Dad. I'm curious about him too. That your sister is affected is scary...but you noted she has a notoriously bad diet and is sedentary. That's something you have control over- especially now that you know you're at risk. I'm so glad you're here. We share the same goal; to beat this thing. I look forward to learning with you.
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Re: Gina99 Intro

Post by Gina99 »

Thanks for the warm welcome. Feel like I already know everyone from the 23andme forums. To answer your question, I ordered kits for my mom, my sister, and my sister's daughter so as to be able to compare DNA results. My dad has passed 9 years ago of prostate cancer, but was in his 80's at that time. I sometimes wonder if my sister really has AD, because I don't feel she got a definitive diagnosis, merely a diagnosis by default. Maybe I am still in denial.Areas I am reading up on are dementia related to depression, initial brain damage due to folate deficiencies, prion disease (maybe it is acontagious disease process in some cases) and inflammatory response. I feel like everyone is lumped into AD by default. How does one get a 'real' diagnosis since examination of tissue after death is the only true diagnosis. My sister and I share a lot of similarities, but are entirely different in so many ways. This should be interesting.
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Re: Gina99 Intro

Post by lol »

DSC_0759.JPG
Gina, Mom @ 88. She is a 4/3 and doing great. Four generations of strong women, and lots of 4s in there! :!:
xo
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Julie G
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Re: Gina99 Intro

Post by Julie G »

For some reason, your photo almost brought tears to my eyes, Gina. Something about your caption... Strong, beautiful e4s! Is that you in the turquoise sweater? You're the doppelgänger for a very dear friend of mine, who's a pharmacist.

Getting a definitive AD DX is very difficult. I was shocked at how little testing is typically done. It seems as though you have to go to a major teaching hospital for any state-of-the-art testing. Your sister is relatively young; it may be worth seeking another opinion. Have you considered coconut oil therapy. I know so me are having pretty amazing results after DX. Check out Mary Newport's book.

I can't wait to see your Mom's APOE status!!! And, was your Dad dementia free when he passed away? All important factors for you.
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Re: Gina99 Intro

Post by lol »

Julie -
It is lol who has brought tears to your eyes.
;)
Gina, welcome!!
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Gilgamesh
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Re: Gina99 Intro

Post by Gilgamesh »

And to my eyes! Wow....
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Julie G
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Re: Gina99 Intro

Post by Julie G »

LOL, then YOU are the spitting image of my dear friend, who is also a big runner :D I'm really anxious to see the rest of your family's results.
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Re: Gina99 Intro

Post by Gina99 »

Ok, since my intro, I have gotten my 96 yo mom's spit in processing and my 45 yo niece in processing. Next, my sister. Then hurry up and wait. I uploaded my dna to promethease and after turkey time spent some time digesting that as well. Been reading up on inflammation in general and heard Dr. D Perlmutter on satellite radio via doctor's radio channel one day. Reading his book. Did I mention I am suddenly dyslexic and can't spell like I used to, and have an ERM on my macula? What fun. I feel like one whole ball of inflammation from head to toe.
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Re: Gina99 Intro

Post by Silverlining »

Hi Gina...we're on a similar path right now. My daughter's sample results came in two days ago...it seems weird to say "yay, she's a 3/4", but I was worried she might be double like me, so a 3/4 seems like good news. My mom's sample is due any day and my dad's in a couple of weeks. Both of my grandmothers developed dementia around 85. One passed at 91 of heart problems and my other grandmother just celebrated her 90th birthday. She has mild/moderate dementia, but can remember some things, care for herself (eat, bathe, dress); although she does need supervision 24/7. Since her caregiver put her on a lower carb diet, I think her cognition is slightly better. I got to spend her birthday with her and she remembered all day long that it was her 90th birthday, it was really cute. Regarding retina issues, I have some type of mystery retina ischemia; no doctors can explain "why" I'm having this....also at fairly high risk of macular degeneration. I read somewhere that you can see changes in the retina's of apoe4 carriers. Are you taking NSAIDS? I saw that might be helpful on Wikipedia for your ERM. Let us know how your samples come back...maybe there will be information that could help more accurately identify what is going on with your sister.
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