Grateful to find this site Newbie

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
KTW11
Contributor
Contributor
Posts: 4
Joined: Thu Apr 04, 2019 11:21 am

Grateful to find this site Newbie

Postby KTW11 » Thu Apr 04, 2019 12:34 pm

Finding this community seems like a promising blessing to me!!! Thank you for being here.
I am in my 20th year as a caregiver to my husband whose APOE status I do not know.
He was diagnosed years ago as Early Onset and tested genetically for that. All negative, yet a genetic connection was clearly appartent as his father, and one brother so far have all presented with the same symptoms.
At this point now, 23andMe has revealed that one of our sons has one copy of E4, so I imagine that our other three grown children may be similar.
Is that assumption correct?
My husband's two years younger brother presented much the same as my husband. His eight year younger brother presents much differently, something that I (maybe mistakenly) attribute to his health and active California lifestyle. One of that younger brother's sons recently found out from 23andMe that he is 4/4.
Until finding this site, I felt hopeless for our four children and thirteen grandchildren. I have really sturggled with whether to let some of my children or nieces/nephews know about their possible genetic history. I still do not think that I will let them know. If they do find out though, I feel like this site is a resource to which I can direct them.
What are your thoughts?

mike
Senior Contributor
Senior Contributor
Posts: 664
Joined: Fri Mar 09, 2018 4:55 pm
Location: CA - Sonoma County

Re: Grateful to find this site Newbie

Postby mike » Thu Apr 04, 2019 2:24 pm

KTW11 wrote:Finding this community seems like a promising blessing to me!!! Thank you for being here.
I am in my 20th year as a caregiver to my husband whose APOE status I do not know.
He was diagnosed years ago as Early Onset and tested genetically for that. All negative, yet a genetic connection was clearly appartent as his father, and one brother so far have all presented with the same symptoms.
At this point now, 23andMe has revealed that one of our sons has one copy of E4, so I imagine that our other three grown children may be similar.
Is that assumption correct?
My husband's two years younger brother presented much the same as my husband. His eight year younger brother presents much differently, something that I (maybe mistakenly) attribute to his health and active California lifestyle. One of that younger brother's sons recently found out from 23andMe that he is 4/4.
Until finding this site, I felt hopeless for our four children and thirteen grandchildren. I have really sturggled with whether to let some of my children or nieces/nephews know about their possible genetic history. I still do not think that I will let them know. If they do find out though, I feel like this site is a resource to which I can direct them.
What are your thoughts?
NF52 wrote:Hi!

KTW11, welcome. I'm sure one of the regular welcomers will find you soon, but I wanted to answer a couple of your questions. If one of your children have one copy, and you don't have an E4, then your husband would have to have at least 1 E4. If he has 1 E4 and you have none, then your other children would have a 50% chance of getting 1 E4. If your husband has 2 E4s and you have none, then all of your children would have 1 E4. That being said, genetics is only a part of Alzheimer's. Age is a bigger factor, for instance, as is life-style. There is a lot of info on this site, and good search capability. Start by going to the Getting Started forum and read the Primer. Knowledge is power, and it is possible to slow the onset and maybe reverse it a bit, depending on how far along a person is. But start by taking a breath and read. There is hope.

Later edit: Once you are comfortable, it would be good to get everyone tested for ApoE4 Status, since while it is only a part of AD, it can help with knowing how to treat it and what preventative measures to take. ApoE4 is not usually an Early Onset type of dementia, so it's possible that there are other issues involved with your husband - toxics? poor sleep?
Sonoma Mike
4/4

NF52
Support Team
Support Team
Posts: 1287
Joined: Tue Oct 25, 2016 9:41 am
Location: Eastern U.S.

Re: Grateful to find this site Newbie

Postby NF52 » Thu Apr 04, 2019 3:09 pm

KTW11 wrote:Finding this community seems like a promising blessing to me!!! Thank you for being here.
I am in my 20th year as a caregiver to my husband whose APOE status I do not know.
He was diagnosed years ago as Early Onset and tested genetically for that. All negative, yet a genetic connection was clearly appartent as his father, and one brother so far have all presented with the same symptoms.
At this point now, 23andMe has revealed that one of our sons has one copy of E4, so I imagine that our other three grown children may be similar.
Is that assumption correct?...Until finding this site, I felt hopeless for our four children and thirteen grandchildren...What are your thoughts?
Dear KTW11,
Let me give you a warm hug and welcome! You are an inspiration to those of us who have watched our own loved ones struggle with dementia and who have known that the unknowns are sometimes the biggest burden to carry. Your husband must feel great love and comfort from your commitment to be his care partner all these years. I hope you also understand the importance of taking care of yourself; it is something that I have told my husband he had better do if I am in need of care. (Remember: "first put the oxygen mask on yourself" on airplane safety drills.)

I am 67 and have ApoE 4/4, so please don't feel hopeless for your children and grandchildren. I have 3 adult children, all of whom are ApoE 3/4 and all of whom are smart, healthy and living lives with purpose and fun. They know that their grandmothers on both sides had dementia, even though my mother-in-law may have had ApoE 3/3 (my husband is ApoE 3/3). So ApoE 4 does not mean your son will get Alzheimer's and not having ApoE 4 doesn't mean that person has no risk.

Genes are not destiny: Our lives can turn them on--and off-- in amazing ways!
Your 13 grandchildren are likely as diverse in their genes as their looks and are probably 50-70 years younger than your husband, with vastly different diets, environment, health care, etc.

Early Onset Alzheimer's disease (EAOD) usually is diagnosed in the 40's or early 50's, different than ApoE 4. The fact that he tested "negative" for the genes that cause EAOD suggests that he may have what is now being called "young onset" dementia--an earlier age of the same disease seen in "sporadic" or Late-Onset Alzheimer's Disease (LOAD) after age 65.

That may mean that he had specific risk factors that tipped the scale for him, such as exposure to toxic chemicals (pesticides, heavy metals, air or water pollution), diabetes, high blood pressure, obesity, sleep apnea, high levels of stress, a history of repetitive brain injuries, heart disease. If that is true, it wasn't his fault; we knew so much less 20-30 years ago about the risks of some of those things and others were beyond our control. My dad died at age 67 of severe coronary artery disease, after 23 years with what his doctor called "mild diabetes" and "mild high blood pressure". He only found out he needed quadruple bypass surgery 7 months before he died. Six months after he died in 1986, researchers announced that ALL patients with diabetes were at high risk of cardiac disease and should be monitored closely and their glucose much better controlled. My siblings and I have a better better chance at a long life span because of changes in what a "good diet" looks like in the last 30 years.

Your children know their Dad has lived with this disease for 20 years. It may be time to have a conversation not to tell them what you think they should know, but to ask them what they want to know about his condition, about his possible genetic risk and theirs. My guess is that simply saying "I'd like to hear what you all have been feeling and thinking about your dad's Alzheimer's disease" would be the start of many warm, love-filled and sometimes surprising conversations. Some may not want to talk at all; others may have been waiting for the chance to share.

Here's a link to forum conversations about testing for ApoE 4: Thinking About Testing? .

And on the topic of telling your adult children, here's a forum thread with lots of views:
Tell my children or not?

For tips on how to quote users so they are notified of your reply, how to "search" and "subscribe' to topics, and how to check unread posts, see the "How-To" Get the most out of the ApoE4.info website

Please keep posting; we love to meet new friends. Hugs from a happy 67 year old with ApoE 4/4!

And thanks to
mike wrote:
for alerting me to your wonderful post!
4/4 and still an optimist!

Matisse
Contributor
Contributor
Posts: 53
Joined: Sun May 04, 2014 4:44 pm

Re: Grateful to find this site Newbie

Postby Matisse » Fri Apr 05, 2019 11:37 pm

KTW11 wrote:Finding this community seems like a promising blessing to me!!! Thank you for being here.
I am in my 20th year as a caregiver to my husband whose APOE status I do not know.
He was diagnosed years ago as Early Onset and tested genetically for that. All negative, yet a genetic connection was clearly appartent as his father, and one brother so far have all presented with the same symptoms.
At this point now, 23andMe has revealed that one of our sons has one copy of E4, so I imagine that our other three grown children may be similar.
Is that assumption correct?


Welcome! Bless you for caring for your husband. I am wondering how long ago your husband was tested. Researchers are continuing to discover more early onset genes. As others have said, apoe4 typically does not cause early onset dementia.

JudyH
Contributor
Contributor
Posts: 49
Joined: Thu Dec 27, 2018 4:30 pm

Re: Grateful to find this site Newbie

Postby JudyH » Mon Apr 08, 2019 7:34 pm

KTW11 wrote:Finding this community seems like a promising blessing to me!!! Thank you for being here.
I am in my 20th year as a caregiver to my husband whose APOE status I do not know.
He was diagnosed years ago as Early Onset and tested genetically for that. All negative, yet a genetic connection was clearly appartent as his father, and one brother so far have all presented with the same symptoms.
At this point now, 23andMe has revealed that one of our sons has one copy of E4, so I imagine that our other three grown children may be similar.
Is that assumption correct?
My husband's two years younger brother presented much the same as my husband. His eight year younger brother presents much differently, something that I (maybe mistakenly) attribute to his health and active California lifestyle. One of that younger brother's sons recently found out from 23andMe that he is 4/4.
Until finding this site, I felt hopeless for our four children and thirteen grandchildren. I have really sturggled with whether to let some of my children or nieces/nephews know about their possible genetic history. I still do not think that I will let them know. If they do find out though, I feel like this site is a resource to which I can direct them.
What are your thoughts?


Welcome KTW11. I am another newbie like you so don't have a lot to add but a couple of thoughts. Your nephew from your husband's younger brother is a 4/4. That means he got one 4 from his mom and one from his dad so all you really know about your husband's younger brother is that he is a ?/4 and I gathered from your comments that he is doing well.

You have a son with one 4. He is likely a 3/4 and it is likely that the 4 came from your husband. The question is, what is your husband? If he is a 4/4 all your children will carry at least one e4. I do not know if your husband is well enough to perform a test but have you thought about testing yourself? If you are e3/e3, your children would be at worst e3/e4. That is a more comfortable position than being an e4/e4 although there are no guarantees even if you carry no e4's or (2) e4's as others have explained. But I know if I was an e4/e4, my sense of urgency to improve all my risk factors would be greater.

I have 3 children. They are late 20's to early 30's. I have decided not to tell them at this point. They have a 50% chance of inheriting my e4. I do not know what their father is although he does have some dementia history in his family. Right now my children are deep in the busy phase of life of growing their families and all 5 1/2 of my grandchildren are 4 and under. They are busy!! In my mind, as they hit their 40's, that would be the right time to let them know my genetic history so they can decide whether or not they would like to know theirs. I am hoping in that decade more will be known and medical science will have advanced to make this less scary for them. They are currently healthy, fit and active and should one of them develop a medical condition that would independently increase their risk of AD (Type 2 D, obvious insulin resistance belly), I might clue that child in earlier to encourage them to take it seriously and improve their health or learn whether or not they share my e4 risk factor. I suspect, since you have been a caregiver for so long, that your children are older than mine. It is a very personal decision whether or not to tell them. I only learned my own status in December and although I am very glad I know so I can reduce other risk factors, it does weigh heavier on my mind that I like to admit.

Your job is hard, very hard, you have my respect and admiration.
e3/e4
No family history of AD, they drop dead of heart attacks in their early 40's!
Celiac and Hashimotos

KTW11
Contributor
Contributor
Posts: 4
Joined: Thu Apr 04, 2019 11:21 am

Re: Grateful to find this site Newbie

Postby KTW11 » Tue Apr 09, 2019 9:43 pm

Judy H
Thank you so much for your reply. Honestly, finding this website is like a lifeline to me right now. And indeed, I am in the process doing as you suggest, getting my own DNA information as well as my husband's.
Once I do that, I will decide about when/how to discuss with my sons and daughters. They are all so different.In the meantime, I hope to learn as much as I can about APOE4, and this seems like the best place to do that.

Once again, thank you for taking the time to write.


Return to “Our Stories”

Who is online

Users browsing this forum: No registered users and 7 guests