New Member Intro - New Mexico

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
jphilip
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New Member Intro - New Mexico

Postby jphilip » Sun Jun 09, 2019 5:43 pm

Greetings

3/4 Newbie here...been lurking for a few months and decided to dive in today. I'm a genealogy junkie and ended up here once the LOAD test from 23andMe showed up. This board has been great. Good info, good people...

AD runs on my moms side - My Grandmother and Great Aunt both had it, my mom (an only child) is showing signs. Since she is beginning to show some memory issues the family is now discussing her care. Some perspective - we recently had a family member pass and within 3 hours she forgot. She did ultimately remember, but it was a bit surreal.

How many of you disclosed the APOE status to your family members, especially siblings? Do you freely share? I'm debating disclosing since in our case, memory issues are somewhat par for the course. My concern is that her situation might be a little worse than just "getting forgetful".


Thanks

Jeff

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Re: New Member Intro - New Mexico

Postby donbob » Mon Jun 10, 2019 2:57 am

My approach to sharing is to ask they read an online presentation on the pros and cons of knowing. After that, those that ask are told my result.
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Re: New Member Intro - New Mexico

Postby DebB » Wed Jun 12, 2019 8:11 am

Hi I am DebB from the UK, also a new member, discovered I had 4/3 some years ago and following memory issues last year started to investigate further, first read Lorin and McL:eary and started their recommenedde supplements then accidently came accross Dr Bredesens book, OMG, the best thing ever!!! I have a strong family history of AD, but only in females, (grandmother, aunt, mother) so I wondered is this gene sex linked in any way on the X gene does anyone know? My sons and brother have been tested and are all negative! I shhared my result as I felt knowledge is power, without this knowledge you will not do anything about it, but if you have APOE4 you have the option to act on it.

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Re: New Member Intro - New Mexico

Postby CarrieS » Wed Jun 12, 2019 9:18 am

DebB wrote:Hi I am DebB from the UK, also a new member, discovered I had 4/3 some years ago and following memory issues last year started to investigate further, first read Lorin and McL:eary and started their recommenedde supplements then accidently came accross Dr Bredesens book, OMG, the best thing ever!!! I have a strong family history of AD, but only in females, (grandmother, aunt, mother) so I wondered is this gene sex linked in any way on the X gene does anyone know? My sons and brother have been tested and are all negative! I shhared my result as I felt knowledge is power, without this knowledge you will not do anything about it, but if you have APOE4 you have the option to act on it.

Hello DebB and Welcome to this community!
I agree that knowledge is power and that we DO have options to act upon. There is a wealth of information contained within this site between the Forums and Wiki. This How To post is a great place to start to help you figure out how to navigate posting, searching, responding, etc. The Primer, created by physician member Stavia, is another great resource.
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Re: New Member Intro - New Mexico

Postby DebS » Wed Jun 12, 2019 4:17 pm

DebB wrote:Hi I am DebB from the UK, also a new member, discovered I had 4/3 some years ago and following memory issues last year started to investigate further, first read Lorin and McL:eary and started their recommenedde supplements then accidently came accross Dr Bredesens book, OMG, the best thing ever!!! I have a strong family history of AD, but only in females, (grandmother, aunt, mother) so I wondered is this gene sex linked in any way on the X gene does anyone know? My sons and brother have been tested and are all negative! I shhared my result as I felt knowledge is power, without this knowledge you will not do anything about it, but if you have APOE4 you have the option to act on it.


Hi DebB! Yes, there is a connection. Dr. Bredesen said in his Facebook post on Mother's Day, "Alzheimer’s disease is a disease of mothers—2 out of every 3 patients is a woman (the vast majority mothers), and 60% of caregivers are women." I absolutely agree that knowledge is power. You are in a great place to learn and put that knowledge to use. As Carrie mentioned, our primer is a perfect jumping off point. When you are ready, we would love to hear more about you in Our Stories.

Please feel free to reach out anytime with questions.
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Re: New Member Intro - New Mexico

Postby JudyH » Wed Jun 12, 2019 7:13 pm

I believe my mom was an e4/e4 but have no way to prove it. I am an e3/e4. I chose to share this info with one of my two brothers. That brother shares some of the characteristics that I thought might be improved to lower our chances of AD due to his body type and other health issues he has. I chose not to share with my other brother as he has significant health management issues he deals with being 2 years post liver transplant. Interestingly enough, his biomarkers are much better than us other two siblings with a new liver and I don't think this was an appropriate thing to add to his plate since the impact of his new liver on all of this is a huge unknown. As of now, I have chosen not to tell my 3 children in their late 20's and early 30's. I will tell them as their lives settle down (all new parents) and they approach their 40's.
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Re: New Member Intro - New Mexico

Postby floramaria » Thu Jun 13, 2019 10:11 am

jphilip wrote:Greetings

3/4 Newbie here...been lurking for a few months and decided to dive in today. I'm a genealogy junkie and ended up here once the LOAD test from 23andMe showed up. This board has been great. Good info, good people...

AD runs on my moms side - My Grandmother and Great Aunt both had it, my mom (an only child) is showing signs. Since she is beginning to show some memory issues the family is now discussing her care. Some perspective - we recently had a family member pass and within 3 hours she forgot. She did ultimately remember, but it was a bit surreal.

How many of you disclosed the APOE status to your family members, especially siblings? Do you freely share? I'm debating disclosing since in our case, memory issues are somewhat par for the course. My concern is that her situation might be a little worse than just "getting forgetful".


Thanks
Jeff


Welcome, Jeff, from a fellow New Mexican!

The question of who to tell and how to tell them is an important one. In the past I have read discussions of this on this site, so I did a quick search using the magnifying glass (left of the user name) and found a thread titled:
"Tell my children or not?"
There are some excellent posts about how people decided who to tell, what to tell and when that would be applicable for any family member. One of the guiding principles people mention is how useful the information would be to the person receiving it.
If you type Tell my children into the search bar, it will take you to the thread.

In case you haven't found it yet, you might peruse the how-to guide for the site which is in . the WiKi. It gives you information on searching for previous posts on topic of interest to you, how to subscribe to threads, how to quote another member so that he or she will see your reply, and other helpful tips for navigating the site.
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Re: New Member Intro - New Mexico

Postby NF52 » Sun Jun 16, 2019 3:30 pm

jphilip wrote:Greetings

3/4 Newbie here...been lurking for a few months and decided to dive in today. I'm a genealogy junkie and ended up here once the LOAD test from 23andMe showed up. This board has been great. Good info, good people...

AD runs on my moms side - My Grandmother and Great Aunt both had it, my mom (an only child) is showing signs. Since she is beginning to show some memory issues the family is now discussing her care. Some perspective - we recently had a family member pass and within 3 hours she forgot. She did ultimately remember, but it was a bit surreal.

How many of you disclosed the APOE status to your family members, especially siblings? Do you freely share? I'm debating disclosing since in our case, memory issues are somewhat par for the course. My concern is that her situation might be a little worse than just "getting forgetful".
Thanks
Jeff
Hi Jeff,

As Floramaria suggested, here's a forum thread with lots of views:
Tell my children or not? and another wonderful thread started by "Anna" on Thoughts on Disclosure (Who have you told?)

Given your family's concerns with your mother, I would suggest that you consider a comprehensive evaluation by a skilled center such as the Memory and Aging Center at the University of New Mexico in Albuquerque. https://hsc.unm.edu/health/patient-care/neurosciences-stroke-care/memory-aging-center.html I don't have any direct knowledge of their team, but I am a participant in a long-term clinical trial located at a major university Memory Center, I expect that UNM uses many of the same assessments that I take to assess my daily living skills (including interviews with my husband/study partner), my memory for short-term visual and auditory information, my ability to follow directions, my long-term memory and my processing speed for visual-motor task, as well as blood and urine analyses of lots of different helpful indicators of my health. The nurse practitioner I see every 3 months is also a member of the diagnostic Memory Center team, a position she trained for in addition to her research work and a responsibility she takes very seriously for the new patients and family members who have many, many questions. These evaluations are covered by Medicare and similar plans in almost all cases, and the staff would be able to answer questions about the cost. Whether it will be helpful to tell her of your ApoE 4 status or to test her are different questions.

Here's a link to forum conversations about Thinking About Testing?.

You may want to discuss as a family or ask your mother if she has assigned someone to be her health care proxy and if someone has a durable power of attorney. That person and others can make her daily life easier, as in setting up automatic bill-paying, having cleaning services and groceries delivered, if needed, and arranging for transportation for routes that may be somewhat novel or less routine. (My mother was once helped by the staff and customers of a wonderful Ethiopian restaurant when she got lost on the way to a familiar location. They gently convinced her to wait for my sister inside instead out in the snowstorm outside. At that point, we also had a "surreal moment".)

I send you warm wishes for much support from family, friends, professionals and this forum, Jeff.
4/4 and still an optimist!


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