Genealogy and Assessing Risk

[jphilip]

Greetings...
I'm a 3/4. I've been a rather quiet consumer of all the information on this board and appreciate how positive a resource this community is for those with an increased AD risk. So a big thanks to all of you.

Genealogy is my main hobby, so before jumping into APOE-land I had already spent a lot of time with DNA, triangulation, etc.. So when I saw where the APOE marker was located, I kinda knew immediately which of my ancestors that might have passed the gene my way.
With publicly available information, I was able to confirm a pattern of memory illnesses from those ancestors and their descendants. It is a bit of a sad hobby, but just curious if others have done the same thing while assessing their risk?

Jeff

[donbob]

Death certificates on my father’s side often listed diabetes. On my mother’s side dementia blossomed in recent known times. Both seem correlated with the rise in per capita sugar consumption. Mindful of the lessons of the ancestors, I eat low carb, exercise, practice yoga, meditate, and generally enjoy life. Nothing I can do today will change yesterday. I can’t do anything tomorrow until tomorrow. I try to focus on today.

[SamNZ]

Greetings...
I'm a 3/4. I've been a rather quiet consumer of all the information on this board and appreciate how positive a resource this community is for those with an increased AD risk. So a big thanks to all of you.

Genealogy is my main hobby, so before jumping into APOE-land I had already spent a lot of time with DNA, triangulation, etc.. So when I saw where the APOE marker was located, I kinda knew immediately which of my ancestors that might have passed the gene my way.
With publicly available information, I was able to confirm a pattern of memory illnesses from those ancestors and their descendants. It is a bit of a sad hobby, but just curious if others have done the same thing while assessing their risk?

Jeff

Hi Jeff,
Welcome to our community and thank you for speaking out on this site. I love your hobby and think that there is a huge amount of relevance finding out how many of your ancestors had memory issues. On a larger scale I think it could potentially offer a huge insight on how much our current lifestyle is helping or hindering the onset of cognitive decline, please dig deeper and maybe you can find some others to help, could be a very interesting retrospective study if some trends could be identified!!!
I am just checking that you have found the best place to start on the site for really understanding the impact of the ApoE4 gene on our physiology, the Primer delivers a great deal of information of the influence of the apoe4 gene.
Thank you again for commenting, I hope you find more of your tribe here, we would love to know more about you also, if you would like to introduce yourself in the Our Stories forum. Welcome again, SamNZ.

[NF52]

Greetings...
I'm a 3/4. I've been a rather quiet consumer of all the information on this board and appreciate how positive a resource this community is for those with an increased AD risk. So a big thanks to all of you.

Genealogy is my main hobby, so before jumping into APOE-land I had already spent a lot of time with DNA, triangulation, etc.. So when I saw where the APOE marker was located, I kinda knew immediately which of my ancestors that might have passed the gene my way.
With publicly available information, I was able to confirm a pattern of memory illnesses from those ancestors and their descendants. It is a bit of a sad hobby, but just curious if others have done the same thing while assessing their risk?

Jeff

Welcome, Jeff!
I too was a "quiet consumer" of this forum for a while before deciding it might be fun to jump in, so let me assure you that we are always glad when people make that decision, and grateful for your positive feedback. I think most of us found out our ApoE status through sites such as 23&me, with a smaller group finding out through blood tests ordered for other reasons (often without being ready for the results). As someone with ApoE 4/4, I know that both my parents carried at least one copy of ApoE4, and "kinda" know which grandparent might have had that gene. But unlike you, I have one side of the family with few relatives and one side that has an abundance of relatives with no dementia before the 80's, which doesn't rule out ApoE 3/3. So rather than worry about the inherited risk, which is about 20-25% for people with Apoe 3/4 who are my age (60-75), I focus on what I can control and try to make up for the lack of knowledge my ancestors (and I in many cases) had on protective health habits.

I also found this quote from a user with a similar interest, so am "quoting" him so that he will see your post. And you can see that maybe all the genealogy info doesn't have to be sad, especially for your living relatives. (See below for how to "quote" people to trigger notifications.)

My interest in family tree genealogy naturally led to an interest in my personal genetics and some information that I wasn't ready for. I took the 23andme test to find family connections and took the health portion thinking it would show me to be genetically bulletproof. Instead, I got hit with a double APOE4. I was crushed. I literally went through the whole grieving process over the following 3 months. I went from denial, to anger, depression, and finally acceptance. The first month was terrible, I kept visualizing my gravestone and felt like a milk carton with a much earlier expiration date. Ya, it was really bad. Then I finally calmed down and spent the next two months researching the facts and putting things into perspective. I changed my diet, prioritized sleep, and stopped being so stressed. It helped me take control and turn my dread into hope. I guess the whole thing really hit me hard because I don't have any Alzheimers in my family. I'm 35 years old and all 4 of my grandparents are still alive and healthy. Two are 90, one is 85 and one is 80. None have alzheimers. I fortunately had my paternal grandparents dna results from earlier genealogy and found that I got one copy of E4 from my 90 year old grandfather who has zero cognitive issues. That made me feel a lot better, and it should make any other 3/4 folks feel better that a 90 year old carrier can be totally fine. My other E4 comes from my maternal side, where both grandparents are over 80 and fine. It shows that this gene is not determinant and that we are all capable of living long lives if we just make some changes.

SamNZ's suggestions are spot on, and here's how to navigate around our software, which is sometimes "ancestral"!
"How-To" Get the most out of the ApoE4.info website

[circular]

I also do a lot of genealogy and genetic genealogy. I'm particularly interested in death certificates and old terminology used for medical conditions. Artereosclerosis was sometimes used for dementia. In my grandmother's case, in retrospect, she most likely had AD but the dx was artereosclerosis. I always assumed my one copy of e4 was from her (her sister and father also had AD like dementia. It turned out I got the 4 from my father, whose paternal grandmother had AD-like dementia but not his own mother when she died in her 90s. It appears there could be strong non-e4, pro-AD genetics on my mother's side, and possibly protective genetics on my father's.

But of course it's so complex and hard to draw conclusions. I see a lot of artereosclerosis in death certs on my tree, but this could well have just been referring to cardiovascular issues. I really want to know how they dx that 'back in the day'.

[circular]

I also do a lot of genealogy and genetic genealogy. I'm particularly interested in death certificates and old terminology used for medical conditions. Artereosclerosis was sometimes used for dementia. In my grandmother's case, in retrospect, she most likely had AD but the dx was artereosclerosis. I always assumed my one copy of e4 was from her (her sister and father also had AD like dementia). It turned out I got the 4 from my father, whose paternal grandmother had AD-like dementia but not his own mother when she died in her 90s. It appears there could be strong non-e4, pro-AD genetics on my mother's side, and possibly protective genetics on my father's.

But of course it's so complex and hard to draw conclusions. I see a lot of artereosclerosis in death certs on my tree, but this could well have just been referring to cardiovascular issues. I really want to know how they dx that 'back in the day'.

[Morazan]

Hi, Jeff. I'm new here, too. I discovered my Apoe status (4/4) as a direct result of my genealogical research. I had become fascinated by my great-grandfather, Charles D. and his wife Dora, and I was able to learn a great deal about them because of all the newspapers and magazines that have been digitized in recent years. I noticed that Charles' mother, Phoebe, listed different, and increasingly strange, birthplaces for her parents in the 1880, 1900, and 1910 censuses... "That's odd," I thought, "maybe she was a little nuts." Sure enough, I later found this notice in a January, 1912 church bulletin: "Charles D. was called to Pueblo last Friday by a message announcing the death of his mother. She was 77 years old and for several years had been a helpless invalid. Charles' loving care for his mother was one of those sad, sweet ministries which no man would publish for himself and none can conceal from others..."

I received confirmation of Phoebe's condition from my 90-year-old aunt. I had mentioned that it must have been nice for Charles and Dora to have Phoebe in the house to babysit their five children, and my aunt burst out laughing. "Are you kidding? It was the children who had to babysit Phoebe. My mother told stories of how Phoebe would wander off and get lost, and leave pots burning on the stove. She was a terrible burden for the whole family."

Well, in my arrogance, I had been assuming that I would take after Dora, my great-grandmother, who was vivacious and independent into her late 80s. Or my own mother, who is approaching 90 in good health. So imagine my shock when I received my 23andMe results (ApoE 4/4). What? I'm not Dora!? I'm Phoebe!? How can this be?! NOT FAIR!!! Suddenly, "genealogy" became painfully real and relevant. I can now "see" that cruel gene making its way directly from Phoebe, to Charles (died in his early 60s), through my grandmother (70s, no dementia), to my father (died at age 41 with heart/artery congestion), to me (noticeable memory issues since menopause), and to my sweet daughter, who is also 4/4. And when I look at my brothers, I suspect that two of them are 4/4 too, although they refuse to get tested.

Well, like you said, "it is a bit of a sad hobby," but it is also fascinating. Especially the way that certain personality traits, musical abilities, crooked teeth, and even political leanings seem to be passed along the same genetic pathways. I read somewhere that the Apoe4 gene is correlated with high verbal fluency. Isn't that weird? So we shouldn't aim to eliminate the gene from our gene pool, just mollify its effects.

Best of everything to you and yours, Mary D.

[circular]

I also do a lot of genealogy and genetic genealogy. I'm particularly interested in death certificates and old terminology used for medical conditions. Artereosclerosis was sometimes used for dementia. In my grandmother's case, in retrospect, she most likely had AD but the dx was artereosclerosis. I always assumed my one copy of e4 was from her (her sister and father also had AD like dementia). It turned out I got the 4 from my father, whose paternal grandmother had AD-like dementia but not his own mother when she died in her 90s. It appears there could be strong non-e4, pro-AD genetics on my mother's side, and possibly protective genetics on my father's.

But of course it's so complex and hard to draw conclusions. I see a lot of artereosclerosis in death certs on my tree, but this could well have just been referring to cardiovascular issues. I really want to know how they dx that 'back in the day'.

Couldn't delete this second copy. Was trying to edit and clicked quote instead. Terrible habit of mine ... thought I was doing so much better about it

[NF52]

...I discovered my Apoe status (4/4) as a direct result of my genealogical research... I later found this notice in a January, 1912 church bulletin: "Charles D. was called to Pueblo last Friday by a message announcing the death of his mother. She was 77 years old and for several years had been a helpless invalid. Charles' loving care for his mother was one of those sad, sweet ministries which no man would publish for himself and none can conceal from others..."
...Suddenly, "genealogy" became painfully real and relevant. I can now "see" that cruel gene making its way directly from Phoebe, to Charles (died in his early 60s), through my grandmother (70s, no dementia), to my father (died at age 41 with heart/artery congestion), to me (noticeable memory issues since menopause), and to my sweet daughter, who is also 4/4. And when I look at my brothers, I suspect that two of them are 4/4 too, although they refuse to get tested....
Best of everything to you and yours, Mary D.

A warm welcome, Mary,

I have to say that you certainly show the "high verbal fluency" that some view as one of our ApoE 4 gifts! I would cheerfully read more about your genealogical research and imagine you could have a thriving business doing research for others and weaving the results into vivid narratives. I also want to thank you for the 1912 eloquent quote from Phoebe's obituary: "Charles' loving care for his mother was one of those sad, sweet ministries which no man would publish for himself and none can conceal from others." A beautiful tribute to Charles (and Dora, I'm sure).

I also have a Dora, a great-great aunt on my father's family tree. I grew up hearing only one thing about Dora: always said with wonder: "she lived to be 98"! Years later, I realized she must have been the aunt of my paternal grandmother, who eventually lived to be 93--and was smart and independent until age 87, when she contracted salmonella. So Phoebe also may have been smart and independent until well into her 70's when multiple factors, some of which could be prevented today, caused her fairly rapid decline.

I think, however, that you are not Phoebe, or rather that only 6.25% of your DNA is from Phoebe, while 50% is from your almost 90-year old mother. Ancestral DNA Percentages – How Much of Them is in You? While you did inherit an ApoE 4 from each parent, it's also highly likely that you inherited some strong "resistant" genes, which work in an epigenetic way to prevent the formation of toxic brain amyloid, tau and other neurotoxic effects, and strong "resistant" factors, which are seen in autopsy studies of many cognitively healthy 90+ people who show evidence of significant neurological biomarkers associated with Alzheimer's, but no signs of the disease.

Like your father, whom you lost decades too young at 41, my father died of severe coronary artery disease at 67. Since you have not had his early disease, it's likely that he had environmental or medical factors that drove that rapid progression. We have many members on this forum who have a common refrain: "No family history of Alzheimer's; everyone died of heart disease or strokes." Some of them have discovered they also have genes for familial hypercholesterolemia, or aortic stenosis, or a predisposition to get diabetes, or high blood pressure. By addressing those risk factors (or avoiding risks like smoking and working in toxic environments) they have managed to avoid the heart disease that may also have triggered cognitive issues in later life.

Here's a few other things that may help you feel more confident about your own future:
* People who have an optimistic attitude about getting older (as in looking forward to the 90's), appear to have less cognitive decline. (May be because they are healthy, or because their views lead them to engage in brain-healthy behaviors.)
* People who have continued social engagement, purposeful activity and exercise in mid-life (as you seem to have) are also less likely to show cognitive decline. Lifestyle changes prevent cognitive decline even in genetically susceptible individuals
* Population studies from large cohorts of people in the U.S. and Netherlands suggest that you and I, both with ApoE 4/4 and both (I assume) over age 60, have a 45-70% chance of living to age 85 without even a diagnosis of Mild Cognitive Impairment, or AD. APOE-related risk of mild cognitive impairment and dementia for prevention trials: An analysis of four cohorts And that's using data from people who likely were unaware of ApoE4 and of strategies to mitigate risk.

So since you are a researcher, I suggest you explore the Primer, written by Stavia, a doctor with ApoE 4/4, who has compiled strong evidence for many basic strategies to consider, and who also has an important section on HRT (if you are less than 10 years post-menopause).

And to help you navigate this forum, and especially have your wonderful posts see by others, check out the How-To guide.

We are a community of learners--learning both from our ancestors and our own experiences--with the goal of rewriting what is predicted for our future. Thank you for joining us!

[NF52]

Couldn't delete this second copy. Was trying to edit and clicked quote instead. Terrible habit of mine ... thought I was doing so much better about it

Hi circ,
If you go to your duplicate post and then the row of icons where the "quote" mark is, you'll see the second one in is an X. Click on that and it will delete your second post. (And it only works on your posts; we can't go around deleting each others!) Might not stay "open" forever; I just noticed one disappeared on mine, so no worries if it's a duplicate!!