New Member Introduction

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
Nevada
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Joined: Sun Mar 03, 2019 11:17 am
Location: Sierra Nevada Foothills

New Member Introduction

Postby Nevada » Sun Mar 03, 2019 3:51 pm

I learned about my APOE4/E4 status about a year ago and it was confirmed by a second DNA analysis. Not happy about that, but I decided to get involved with the Alzheimer's Association doing volunteer public policy advocacy work and participating in the Generation I study and am now taking 50mg of CNP520 or Placebo. These experiences as well as my spouse's emotional support have been positive. I am retired and have accelerated fulfilling my "bucket list". I have enjoyed reading the thoughtful comments and information of others. In particular, I am interested in learning what the reaction of friends, relatives, and adult children has been to your disclosure of your APOE4 status and elevated risk of AD. I have received genetic counseling, but there is a dearth of research on this issue. Thanks.

mike
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Re: New Member Introduction

Postby mike » Sun Mar 03, 2019 6:10 pm

Nevada wrote:I learned about my APOE4/E4 status about a year ago and it was confirmed by a second DNA analysis. Not happy about that, but I decided to get involved with the Alzheimer's Association doing volunteer public policy advocacy work and participating in the Generation I study and am now taking 50mg of CNP520 or Placebo. These experiences as well as my spouse's emotional support have been positive. I am retired and have accelerated fulfilling my "bucket list". I have enjoyed reading the thoughtful comments and information of others. In particular, I am interested in learning what the reaction of friends, relatives, and adult children has been to your disclosure of your APOE4 status and elevated risk of AD. I have received genetic counseling, but there is a dearth of research on this issue. Thanks.

Welcome. Here is a forum that talks about that: viewtopic.php?f=33&t=4347&hilit=telling+parents
Sonoma Mike
4/4

NF52
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Re: New Member Introduction

Postby NF52 » Sun Mar 03, 2019 6:21 pm

Nevada wrote:I learned about my APOE4/E4 status about a year ago...I decided to get involved with the Alzheimer's Association doing volunteer public policy advocacy work and participating in the Generation I study and am now taking 50mg of CNP520 or Placebo. These experiences as well as my spouse's emotional support have been positive...In particular, I am interested in learning what the reaction of friends, relatives, and adult children has been to your disclosure of your APOE4 status and elevated risk of AD. I have received genetic counseling, but there is a dearth of research on this issue. Thanks.
Welcome, Nevada!
You and I are among more than half a dozen forum members who are in either the Generations 1 or 2 studies. Like you, I am in Generations 1 and am taking either CNP520 (a BACE-1 inhibitor for those new to this topic) or a placebo capsule every day, in my case for the last 18 months. Like you, I have a wonderfully supportive spouse, especially when he has to sit through the biannual visits which take about 20 minutes of his time and 4 hours of mine!

It's wonderful that you are also doing advocacy work for the Alzheimer's Association; we'd love to hear more about your role, and what you see as the priorities for public advocacy.

As far as disclosure, I think it's important that folks who have not participated in clinical trials know that disclosure of ApoE 4 status is done carefully (or was in my case, even though I was clear that I knew my status already.) I think that is one of the reasons why disclosure to family members who may not be as prepared to hear of their risk is sometimes a difficult decision. Even disclosing our own ApoE 4/4 status has the effect of disclosing ApoE 4 status to our children. I know of more than one person whose adult child was initially not happy to be told of the parent's results.

In the Generations screening, disclosure may be made at the first meeting, but per a presentation by the Generations Program at the CTAD conference on Barcelona in 2018,
only after participants are offered the opportunity to watch a “pre-disclosure” educational video or review written materials about AD, APOE, and considerations for learning their APOE results. Participants may also read a brochure or receive informational verbally from study staff describing the Generation Program’s approach to disclosing APOE and amyloid information. Following consent, participants are assessed for psychological readiness to learn their APOE genotype.
See page 21 of this PDF for the abstract: https://www.ctad-alzheimer.com/files/files/CTAD%20ABSTRACT.pdf In addition, participants are carefully monitored through questionnaires and during visits for the first year of participation on their understanding of the risk assessment, their emotional reaction, any changes in mood or feelings of hopelessness, anxiety, depression and suicidality. None of that is available for those we may encourage to learn similar information.

Here's a forum thread on the topic of telling adults children (and others); the range of decisions continues to be varied!
Tell my children or not?

Of my own three adult children, in their late 20's to mid-30's, only one probably knows of her ApoE 3/4 risk from 23&me. They all know that I'm in a study for people at risk of Alzheimer's and work on a Alzheimer's-related forum and have seen grandmothers who had dementia. (And they all know I like projects with challenge!) They all also eat healthy foods, travel, seek out diverse friends and colleagues and read widely in their areas of interest and expertise. My personal opinion is that those skills are all strong predictors of continued good health, and that they will have the benefit of years of fast-paced scientific progress (think gene-editing and massive machine-learning of what works in lifestyle studies) with plenty of time to adjust what they choose.

Here are a few links to make exploring the forum more fun and more useful: The Primer is written by a 4/4 doctor who balances wisdom with balance for what is known and what is still open for discussion. It makes for great reading!

"How-To" Get the most out of the ApoE4.info website is a good starting point for quick tips on how to quote users so they are notified of your reply, how to search and subscribe to forum topics, how to send Private Messages (PMs) and how to use the wiki itself--authored by our members with deep knowledge of topics.

Hugs from a "Study Buddy"!
4/4 and still an optimist!

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SamNZ
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Re: New Member Introduction

Postby SamNZ » Sun Mar 03, 2019 7:18 pm

Nevada wrote:I learned about my APOE4/E4 status about a year ago and it was confirmed by a second DNA analysis. Not happy about that, but I decided to get involved with the Alzheimer's Association doing volunteer public policy advocacy work and participating in the Generation I study and am now taking 50mg of CNP520 or Placebo. These experiences as well as my spouse's emotional support have been positive. I am retired and have accelerated fulfilling my "bucket list". I have enjoyed reading the thoughtful comments and information of others. In particular, I am interested in learning what the reaction of friends, relatives, and adult children has been to your disclosure of your APOE4 status and elevated risk of AD. I have received genetic counseling, but there is a dearth of research on this issue. Thanks.

Hi Nevada, Thanks so much for sharing with us, it is wonderful that you have such good support and are in turn supporting this community so well. I think you will have had plenty to follow up on around the website, but really hope you enjoy being part of our community. Do not hesitate to ask if more questions come up, as the certainly will around the topics you are researching (or navigating the website). We welcome your contributions and experiences in future - Sam NZ
Samantha McBride
Functional Medicine Certified Health Coach

Nevada
New User
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Joined: Sun Mar 03, 2019 11:17 am
Location: Sierra Nevada Foothills

Re: New Member Introduction

Postby Nevada » Mon Mar 04, 2019 3:32 pm

Samantha, NF52, and Sonoma Mike: Thank you for your warm welcome to the group and for some useful ideas and resources.


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