Hi! New member introduction

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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engineerann
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Hi! New member introduction

Post by engineerann »

Hi there - glad to have found this forum. I'm Ann, from California. My maternal grandmother had AD and passed this last December at around 92/93. My mother was tested a couple of years ago as having MCI at the age of 70, and has recently declined considerably. It's been a little shocking and sobering. They live on the east coast, so I don't see them super regularly, but I talked with my dad and my mom's sister in the last week, and they informed me how bad it really is. I'm facing now helping both my mom and my dad with my mom's care. Hoping to get them to move back to CA, expensive as it is. (They will be moving somewhere this summer, I'm trying to get them here, where my husband and I are, and our 3 young kids - hello! Grandkids!!).
I've been tested as 4/4, so seeing both my grandma and now my mom affected, I'm extremely motivated to be proactive about my own health. Thankful to have found this wealth of info and all of you!
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Davida
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Re: Hi! New member introduction

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engineerann wrote:Hi there - glad to have found this forum. I'm Ann, from California. My maternal grandmother had AD and passed this last December at around 92/93. My mother was tested a couple of years ago as having MCI at the age of 70, and has recently declined considerably. It's been a little shocking and sobering. They live on the east coast, so I don't see them super regularly, but I talked with my dad and my mom's sister in the last week, and they informed me how bad it really is. I'm facing now helping both my mom and my dad with my mom's care. Hoping to get them to move back to CA, expensive as it is. (They will be moving somewhere this summer, I'm trying to get them here, where my husband and I are, and our 3 young kids - hello! Grandkids!!).
I've been tested as 4/4, so seeing both my grandma and now my mom affected, I'm extremely motivated to be proactive about my own health. Thankful to have found this wealth of info and all of you!

Hi Ann and welcome to the Apoe4 community. I'm so glad that you have found this site! I think you will find the information useful and the people here caring and extremely supportive. I'm sorry for the loss of your grandmother and the recent news of your mother's decline. I can only imagine the difficulty this has been for your family. Several years ago I found myself in a very similar position. All too familiar with living at a distance from my parents, having a husband and raising children. It can be overwhelming at times and nerve racking trying to make the RIGHT decision. It also can be scary when discovering our own genetic make-up. We must remember, genetics is not our destiny and not everyone with Apoe4 gets Alzheimer's Disease. So much of it depends on our attitude, lifestyle, and environment. Choices that we make and have control over.
I congratulate you on being so compassionate towards your family and so motivated and proactive with your own health. It's not always easy but so worth it when we understand now how this disease can be prevented and even reversed.

If you haven't already read Dr. Dale Bredesen's book The End of Alzheimer's, I highly recommend getting a copy. It breaks down the latest science and offers multiple interventions that can improve one's health. Also, on our site, a good place to start is with Primer. It is written by a physician member and provides wonderful information on the Apoe4 gene as well as prioritizing lifestyle interventions for prevention. You may find Wiki useful for more in-depth discussions on topics of interest to you specifically. And for tips on getting the most out of the website, the How to Guide is great for new users.

Remember to go easy, self care is of utmost importance. I did learn this eventually and have to say I am grateful for the time that I and my family had with my mother.
My best to you and again a warm welcome to the community. I look forward to hearing more from you and learning about your journey.

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engineerann
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Re: Hi! New member introduction

Post by engineerann »

Hi Davida, thank you! It's not a pleasant situation, but like most unpleasant situations we find ourselves in, it's good to find others and know you're not alone. I have read Dr Bredesen's book, or at least most of it, about a year and a half ago. I also recently started Amy Berger's The Alzheimer's Antidote, and her blog, which is how I found this site. My poor dad is just overwhelmed with caring for my mom, taking care of household chores especially cooking - which he never had to do - and trying to decide where and how to move. I regret not taking more proactive steps a couple of years ago when we got her MCI diagnosis, but I had just had our 3rd baby and I have a demanding job and they are far away, so not seeing them made the problem less up close. At any rate, we're here now and I'm motivated to take that action. My sister is also in the picture, thankfully. And my mom's 3 younger sisters are also interesting in helping in whatever ways they can.
And thanks, I don't feel any sense of doom related to the 4/4, just a sense of "oh, I need to be more aware of how I'm living my life" and to do what I can within reason to prevent that bad 50% from taking over! I have read through a few pages of the primer (excellent!) and will continue to wade through that. I've been reading "The Gene" by Siddhartha Mukherjee as well. (Unrelated to AD, but fascinating in its own right. And helpful in understanding some of the terminology in the books and literature on AD and genetics).
Anyway, I look forward to being a part of this forum. :)
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Re: Hi! New member introduction

Post by mike »

Ann, in addition to taking better care of yourself, you should also consider your dad. If you are 4/4, then your biological dad must have at least one ApoE4. The added stress of his taking care of your mom can't be good for him. I'm sorry to add to your burden...
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CarrieS
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Re: Hi! New member introduction

Post by CarrieS »

engineerann wrote:I don't feel any sense of doom related to the 4/4, just a sense of "oh, I need to be more aware of how I'm living my life" and to do what I can within reason to prevent that bad 50% from taking over! I
Hi Ann and Welcome,
I too lost my maternal grandmother and mother to AD and am also a 4/4. I agree that knowing has empowered me to prioritize self-care and the research coming out has given me hope that I have some control over my future.
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engineerann
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Re: Hi! New member introduction

Post by engineerann »

Thank you mike, that is something I've definitely thought of. So far, he's doing just fine in that regard. He does have some minor heart issues, so there's that... And he's very organized with their affairs, thankfully.

Sorry to hear about your grandmother and mother, Carrie. It's a brutal situation to be in. Glad for all of the information and research available to US now.
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floramaria
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Re: Hi! New member introduction

Post by floramaria »

engineerann wrote: I've been reading "The Gene" by Siddhartha Mukherjee as well. (Unrelated to AD, but fascinating in its own right. And helpful in understanding some of the terminology in the books and literature on AD and genetics).
Anyway, I look forward to being a part of this forum. :)
Hi engineerann,
Besides sharing your maternal line AD (in my case mother, grandmother and great grandmother) , I share your interest in Siddartha Mukerjee’s book,The Gene. Fascinating for sure! Like you, I found that the book gave me a better basis for understanding genetics in general, and helped tremendously in understanding recent genetic modification controversies as well.
Great book.
Welcome to the community.
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Given the rave reviews on The Gene, and that there is not a copy of the book at my local library, I popped over to Amazon to "Look Inside." I enjoyed Dr Mukerjee's selection of poetry at the beginning of the first chapter of his book:

The blood of your parents is not lost in you
- Menelaus, The Odyssey

They fuck you up, your mum and dad.
They may not mean to, but they do.
They fill you with the faults they had
And add some extra, just for you.

- Philip Larkin, “This Be The Verse”

And timely, with my mother arriving today from out of state to visit!
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NF52
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Post by NF52 »

slacker wrote:Given the rave reviews on The Gene, and that there is not a copy of the book at my local library, I popped over to Amazon to "Look Inside." I enjoyed Dr Mukerjee's selection of poetry at the beginning of the first chapter of his book:

And timely, with my mother arriving today from out of state to visit!
Just be careful you don't end up with your mother trying to wash your mouth out with soap for using bad language!!! My mother had us 1950's kids convinced that "Gee-whiz" was a venial sin and "damn" was an express train to perdition--until she got into her 60's and appreciated the soothing power of a good "D-A-M-N", as she used to pronounce it. By her 70's she was giving the finger to a traffic cop, but since she didn't know which finger to give, she held up her whole hand in proud defiance.
4/4 and still an optimist!
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