Hello!

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
Tardebigge
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Joined: Sun May 12, 2019 7:44 pm

Hello!

Postby Tardebigge » Sun May 12, 2019 7:51 pm

I am new here. I learned I had the APOE4 genes several years ago through 23 and Me. My younger sister (age 72) has been in an Alzheimer's care home for two years. I do not show any signs of the disease at 75, and hope that status continues. I live in the US, in upstate NY.

NF52
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Joined: Tue Oct 25, 2016 9:41 am
Location: Eastern U.S.

Re: Hello!

Postby NF52 » Mon May 13, 2019 6:47 am

Tardebigge wrote:I am new here. I learned I had the APOE4 genes several years ago through 23 and Me. My younger sister (age 72) has been in an Alzheimer's care home for two years. I do not show any signs of the disease at 75, and hope that status continues. I live in the US, in upstate NY.
Welcome, Tardebigge! I was curious enough to Google your user name and discovered its English roots. Looks like a lovely place, and maybe your ancestors' home? I also had ancestors from England, Scotland and Ireland and know from visiting how a fine English mist is perfect for a stroll!

I also am an upstate NY native, who relocated to Virginia about 5 years ago to be near our children and grandchildren. Of course, New Yorkers know that "upstate" to someone in Manhattan may mean Westchester County, while for true upstaters, it means a wide swath of beauty somewhere between Niagara Falls and the Adirondacks, or between the Canadian border and wine country of the Finger Lakes--or hundreds of other places in between. Wherever you call home in upstate NY, I hope this forum feels like a new and welcoming community of friends (and possibly distant relatives) who share those same special ApoE 4 genes and care about how we can best use this new knowledge.

I am so sorry that your younger sister is dealing with Alzheimer's already and hope that you and the rest of her family feel that she is loved, well cared for, and has times when the connections to the things and people and memories she loved are still made.

If you are looking for a good overview of some of the latest thinking on how to reduce our own risk and help our bodies and brains stay resilient, I recommend browsing the Primer. It's written by a physician who is herself ApoE 4/4 and has some easy suggestions for what to prioritize .(Sleep and lower stress are both things I've been able to have more of since retiring!)

Another useful and easy-to-use resource is "How-To" Get the most out of the ApoE4.info website . It shows how to use the quotation mark in the upper right hand corner of each post to quote a member when you reply, so they will get an email notification to check the forum. It also shows how to search for topics of interest and how to use the Wiki, our member-developed "encyclopedia" of ApoE4-related topics.

And a last welcoming topic:
If you are 75 or younger, you may be eligible and interested in clinical studies, which include "observational" studies of healthy people over time using brain MRIs and PET scans and "interventional" studies using a randomly assigned control group which has a placebo or no intervention to compare with a randomly assigned group may have a dietary or exercise intervention or a preventative study drug. Some of these studies are now recruiting healthy ApoE 4 volunteers in Buffalo, Rochester and Latham (near Albany). [Full disclosure: I am in the Generations study of a drug vs. placebo to see if the drug (CNP520) prevents or delays transition to Mild Cognitive Impairment or Alzheimer's in health people ages 60-75 with ApoE 4. Signing up for a long-term trial is a big commitment, and I always think people should ask lots of questions before they commit. These programs have extensive screening processes to ensure that you have time to consider and that your health is paramount.]

Here are some resources for information on how clinical trials work and how to find them:

Together We Make the Difference! Participate in Alzheimer's and Related Dementias Clinical Research is from the National Institute on Aging (a division of the National Institute of Health

Learn About Clinical Studies is a helpful NIH website, with a tab for searching (try Advanced Search to find studies near you, or of certain types.)

GeneMatch is sponsored by the Banner Alzheimer's Institute and sends a cheek swab for DNA testing, then notifies you of studies for which you may be eligible.

We look forward to having you post on many forums to share your insights and experiences! Hugs from a 4/4, 67 year old former upstate New Yorker!
4/4 and still an optimist!

Rainy
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Joined: Thu Jan 25, 2018 2:05 pm

Re: Hello!

Postby Rainy » Wed May 15, 2019 10:38 pm

NF52 wrote: Here are some resources for information on how clinical trials work and how to find them:
Together We Make the Difference! Participate in Alzheimer's and Related Dementias Clinical Research is from the National Institute on Aging (a division of the National Institute of Health
Learn About Clinical Studies is a helpful NIH website, with a tab for searching (try Advanced Search to find studies near you, or of certain types.)
GeneMatch is sponsored by the Banner Alzheimer's Institute and sends a cheek swab for DNA testing, then notifies you of studies for which you may be eligible.

Yes, I would like to second NF52's beautiful welcome to a new fellow 4. I'd also like to add to the resources listed by NF52. Look online at Brain Health Registry for lists of upcoming trials and studies. Check with local universities and health organizations for smaller studies in your area. And sometimes you will see notification of local trials and studies in this forum's announcements.

All the best to you and your sister, we are glad you're here!
Rainy
E4/E4
"Live your life, live your life, live your life!" Maurice Sendak


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