New APOE 4/4, 38yo, sandwich caregiver & hopeful future research? participant

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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lunaglow710
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New APOE 4/4, 38yo, sandwich caregiver & hopeful future research? participant

Post by lunaglow710 »

Hello,

First, I can not thank the universe enough for allowing me to find this amazing group. Sending my deepest gratitude to Julie and all of the founding team, as well as all of the amazing moderators and support team members who invest their time in keeping this community active.

I have admittedly been a lurker for the past few weeks, but have been listening to every podcast, reading as many threads as I can, and diving into the sci literature on APOE as much as life allows. I am mom to an awesome two year old, wife, work full time in the social sciences, and am caregiver for my 69yo mother with prior stroke-related MCI/vascular dementia and recently dx'd smoldering CML.

Like many here, I learned my APOE4 status from 23andMe only recently. I had heard of APOE, but never had time to dive into the details. Had always been curious thanks to family hx of vascular dementia and ischemic strokes suffered by both of my parents, but never got around to testing until someone gave me a 23andMe ancestry and health kit for mothers day this year. In terms of my own health--thankful to be relatively healthy, aside from carrying a little more weight than I would like at the moment, and have followed a vegan diet since ~2004.

I am curious if there are other < and ~40ish folks here and if there are research opportunities or registries that include the under 50 crowd? I've found several studies and registries, but from what I've found so far, eligibility criteria are often limited to 50 or 55 and older. Curious if others have suggestions or have found registries with lower age criteria?

In closing, just want to say that I am so grateful to have found this group and to have opportunities to continue learning as much as I can--including information that I can pass on to my daughter. Seeing that I was 4/4 on paper was eye popping and made my heart race, but after reading much of the content here, I actually feel empowered, motivated, and inspired to do everything I can to understand how my body works and what I can do to protect it and work with what I've got. Thank you!!
NF52
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Re: New APOE 4/4, 38yo, sandwich caregiver & hopeful future research? participant

Post by NF52 »

lunaglow710 wrote: Sun Jul 03, 2022 12:10 pm Hello,

First, I can not thank the universe enough for allowing me to find this amazing group. Sending my deepest gratitude to Julie and all of the founding team, as well as all of the amazing moderators and support team members who invest their time in keeping this community active.

I have admittedly been a lurker for the past few weeks, but have been listening to every podcast, reading as many threads as I can, and diving into the sci literature on APOE as much as life allows. I am mom to an awesome two year old, wife, work full time in the social sciences, and am caregiver for my 69yo mother with prior stroke-related MCI/vascular dementia and recently dx'd smoldering CML.

Like many here, I learned my APOE4 status from 23andMe only recently. I had heard of APOE, but never had time to dive into the details. Had always been curious thanks to family hx of vascular dementia and ischemic strokes suffered by both of my parents, but never got around to testing until someone gave me a 23andMe ancestry and health kit for mothers day this year. In terms of my own health--thankful to be relatively healthy, aside from carrying a little more weight than I would like at the moment, and have followed a vegan diet since ~2004.

I am curious if there are other < and ~40ish folks here and if there are research opportunities or registries that include the under 50 crowd? I've found several studies and registries, but from what I've found so far, eligibility criteria are often limited to 50 or 55 and older. Curious if others have suggestions or have found registries with lower age criteria?

In closing, just want to say that I am so grateful to have found this group and to have opportunities to continue learning as much as I can--including information that I can pass on to my daughter. Seeing that I was 4/4 on paper was eye popping and made my heart race, but after reading much of the content here, I actually feel empowered, motivated, and inspired to do everything I can to understand how my body works and what I can do to protect it and work with what I've got. Thank you!!
Welcome, lunaglow710!

I am so glad you both joined our community and posted about your experiences as a caregiver for your mother, a mom of a two year old, a wife, a social scientist and someone with ApoE 4/4. I also have ApoE 4/4, was the 34 daughter of a dad who died of severe CVD and cardiac arrest and the daughter of a mother with mixed Alzheimer's and vascular dementia. I have a daughter your age and want to recognize the truly unique experience you have had as a parent and probably work-from-home professional since your toddler's birth during or just before COVID. You get bragging rights on that forever!

Here's a resource that seems right up your alley, from an academic research center at UCSF (University of California at San Francisco) whose work I have seen at conferences and whose professional ethics I would trust:
https://www.brainhealthregistry.org Population registries like this one are great resources for scientists seeking to understand risk and resilience across ages level, racial/ethnic/genders and more importantly, how to support health in people your age:
Anyone 18 years and older can join the Brain Health Registry—including healthy people, people with health or memory concerns, people with brain disease, people with a history of brain disease in their family and those without it.

The more people who join and agree to complete questionnaires and brain tests, the more valuable the information gathered will be and the greater impact researchers can have to ultimately accelerate the discovery of treatments for brain disease, such as Alzheimer’s, Parkinson’s, and many more.

The number of participants in the study is growing every day and we are working hard to hit our target of 100,000 participants.
You have all the hallmarks of resilience, and at the age of 70, and a participant in clinical trials and member of an national advisory group on clinical trials who gets to virtually attend AD conferences and hear from researchers, I feel strongly that you and my daughter will have long, healthy lives with far more personalized medical monitoring that your mother had available. I am deeply sure that she is deeply thankful you are in her life and deeply proud of your willingness to be part of research for others.
4/4 and still an optimist!
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Re: New APOE 4/4, 38yo, sandwich caregiver & hopeful future research? participant

Post by Nicnac0526 »

lunaglow710 wrote: Sun Jul 03, 2022 12:10 pm Hello,

First, I can not thank the universe enough for allowing me to find this amazing group. Sending my deepest gratitude to Julie and all of the founding team, as well as all of the amazing moderators and support team members who invest their time in keeping this community active.

I have admittedly been a lurker for the past few weeks, but have been listening to every podcast, reading as many threads as I can, and diving into the sci literature on APOE as much as life allows. I am mom to an awesome two year old, wife, work full time in the social sciences, and am caregiver for my 69yo mother with prior stroke-related MCI/vascular dementia and recently dx'd smoldering CML.

Like many here, I learned my APOE4 status from 23andMe only recently. I had heard of APOE, but never had time to dive into the details. Had always been curious thanks to family hx of vascular dementia and ischemic strokes suffered by both of my parents, but never got around to testing until someone gave me a 23andMe ancestry and health kit for mothers day this year. In terms of my own health--thankful to be relatively healthy, aside from carrying a little more weight than I would like at the moment, and have followed a vegan diet since ~2004.

I am curious if there are other < and ~40ish folks here and if there are research opportunities or registries that include the under 50 crowd? I've found several studies and registries, but from what I've found so far, eligibility criteria are often limited to 50 or 55 and older. Curious if others have suggestions or have found registries with lower age criteria?

In closing, just want to say that I am so grateful to have found this group and to have opportunities to continue learning as much as I can--including information that I can pass on to my daughter. Seeing that I was 4/4 on paper was eye popping and made my heart race, but after reading much of the content here, I actually feel empowered, motivated, and inspired to do everything I can to understand how my body works and what I can do to protect it and work with what I've got. Thank you!!
Welcome lunaglow710,
I second NF52's comments about resilience and how lucky your daughter is to have you. I am very glad that you have been able to see beyond the 4/4 aspect, which is not an easy task.
You may have already found these areas, but as a welcome intern, I will direct you to regions that people often find helpful.
The Primer includes research based prevention strategies and has been written by Stavia, a practicing M.D. with ApoE4/4. She is super knowledgable and like you, optimistic!
The The How to Guide not only has a mass of information - but also a search function in the top right hand corner and it shows how to subscribe to topics of interest.

Please do shout with any questions/ thoughts.

Warm regards
Nicky (Nicnac0526)
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lunaglow710
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Re: New APOE 4/4, 38yo, sandwich caregiver & hopeful future research? participant

Post by lunaglow710 »

Dear NF52 and Nicky,

Thank you so very much for your time and replies. NF52, I love your tag line "4/4 and still an optimist!". Thank you both so much for the great recommendations. You are inspirations. Looking forward to continuing to learn--thank you for all that you do!
-S (lunaglow710)
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