Intro: 4/4 daughter of a EOAD

[Jema]

Hello,

I’m new here. I’m a 36 year old mother of 3. This is my story:

My dad was diagnosed in 2021 with early onset alzheimers disease. He was 59 at the time as his diagnosis. At first I was freaked out because I read on the internet that my chances of getting it was over 50%. (And my unrational brain decided to go ahead and diagnose myself). I’m not sure if my dad could have been diagnosed earlier. We did see a quick decline in 2019/2020 but I think there were signs before. Complicating factors were my dad’s hearing loss- he got hearing aids in his 40s. I’m not sure if this is related but we often ignored him say something not quite on topic because we assumed he couldn’t hear. None of his siblings have had this issue even though they also grew up around the same equipment with no hearing protection, etc. I also believe he has dyslexia (never diagnosed, grew up in the 60s but was held back in school). Dyslexia is also genetic and has some similar symptoms (forgetting things short term, not recognizing things you’ve seen or said or read before). So this could also explain us not recognizing the signs. I believe I may have an undiagnosed case of dyslexia as well. One of my sons has a lot of symptoms of dyslexia but I have not pursued official diagnosis at this time. This was a complete side note, but I am curious because of some overlapping symptoms as well as the genetic component.

I visited a functional medicine doctor this summer who recommended Dr. Breseden’s book to me. He also added the apo test to my blood work. I put off the blood work for 6 weeks because I was torn about it. I finally resolved to NOT get the test done. Well, in the hustle and bustle and anxiety of getting the blood work done and having to register through the hospital I forgot to tell them not to do it. Kinda ironic, huh? Results were e4/e4

I’ve already read so many encouraging things on this board- like being 4/4 isn’t a death sentence. I’m going to talk with my doctor in two weeks, figure out the rest of my blood work: hormones and blood sugars being issues I’ve already been struggling with plus it is numbers 1 & 2 on the recode program.

Family history wise, obviously my dad has at least one 4, his mother and his mother’s mother both had some form of dementia (unknown history of mother’s father). His father is still sharp- his dad’s dad was sharp until he died. His dad’s mom lived to 100 and had some memory issues at the end, but was still pretty sharp.

I’m assuming my mom has one 4 as well, given my numbers. I don’t think any of my great grandparents, save one, lived long enough to have any dementia issues. My 82 year old grandmother has been saying a few things that makes me think she is having issues with memory but she is for the most part uncomparable to my dad, plus the age difference makes it more expected.

Thankfully everyone in my husband’s family is aware and witty, even on their death bed- so hopefully my children have only one allele from me. I wrote this trying to remember high school biology so hopefully the genetics part I got somewhat correct. Haha.

I plan on updating this thread after my appointment if there is any relative information.

Thank you for reading.

[NF52]

Hello,

I’m new here. I’m a 36 year old mother of 3. This is my story:
...
I’ve already read so many encouraging things on this board- like being 4/4 isn’t a death sentence. I’m going to talk with my doctor in two weeks, figure out the rest of my blood work: hormones and blood sugars being issues I’ve already been struggling with plus it is numbers 1 & 2 on the recode program.
...
Thankfully everyone in my husband’s family is aware and witty, even on their death bed- so hopefully my children have only one allele from me. I wrote this trying to remember high school biology so hopefully the genetics part I got somewhat correct. Haha. ...
Thank you for reading.

Hi Jema,

I'm so glad you found this forum and have already found cause for hope.

I'm so sorry about your dad's diagnosis at age 59 which must have upended his life, your mother's and yours. I have met several wonderful people who were also diagnosed in their 50's and are doing well several years later. Every one is different, but each has been able to stay active, meet friends, do what they love (travel, play with grandkids, join clinical trials, join support groups to mentor others, etc). Using your dad's areas of strength, like that family sense of humor, to offset his challenges may help your family to "scaffold support" for him. One "scaffold" that may be respectful and helpful is the Aware/Share card offered by the non-profit Dementia Society of America. It allows people to share what would help them: speaking more slowly, allowing time to respond, making eye contact and conversation.

But your question is about you--and on that I have good news: you have only 50% of you dad's genes and almost none of his life history, even living in the same house for years.

Your dad's diagnosis, while technically "early" onset, is now called by some researchers "young onset", to differentiate it from people who have one of a few completely different genes that causes "autosomal dominant" Alzheimer's, usually in the 40's or early 50's. These genes are rare and people in those families usually have a strong history of members with dementia very early. Since none of your dad's siblings or your grandparents has that history, it is much more likely that your dad has some very unfortunate combination of ApoE 4 risk with other environmental or biological risks that you don't have.

You don't mention if your dad's family has a history of early hearing loss, but it's possible your dad's early school difficulties and "dyslexia" were in part caused by undetected congenital sensorineural hearing loss that made it hard. to learn to read using phonics-- not age-related or noise-related loss.

I worked with children with dyslexia and other learning differences for years, and always was pleased when parents said "I know I have this also, so I will be able to make sure he/she always knows how smart they are and how I have managed to work around this to be able to run my own business/ be an RN/teacher/jewlery designer, etc."
I'd encourage you to ask for free assessment of your son's learning needs; in most cases the results can be used to provide accommodations in the regular classroom that make kids feel understood. I've never seen any study of an association between dyslexia and AD; so I wouldn't see that as an added risk for any of you.

If the "equipment" your dad and his siblings grew up around was farm equipment, you might want to ask his siblings or your mom what his jobs were with that equipment and if he ever had any concussions or other serious injuries. It wouldn't mean anyone was at fault; it might mean that his brain has worked very hard for 6 decades to stay resilient!

Like you, I have two copies of ApoE--one from each parent and am a mother of 3 (adult) kids with ApoE3/4 who are super healthy and wonderful! At age 70 I am more active than I was 20 years ago physically and still very active mentally. Extensive testing says I am "cognitively unimpaired" and have no signs of coronary artery disease, even though my dad died of cardiac arrest at age 67. His identical twin had no heart disease and died of cancer at age 74, so even genetic 'clones" are not on the same path.

The use of modern imaging (PET scans, blood tests for amyloid and tau, MRIs) and rapid advances in basic science promises wonderful improvements in early monitoring and prevention--and lifestyle habits now also will pay off for your whole life. Please take care of yourself, Jema, knowing that your dad would absolutely want you to be kind to your own needs and those of your family. "It takes a village" is also true for our loved ones with Alzheimer's--none of us should walk that path alone.

[Anna]

Jema, you have come to the right place! I was horrified when I got my 4/4 result nearly six years ago. Like you, my mind went straight to my three kids and my parents. At that time, there was not a lot of information about prevention, and I felt doomed. But things have changed! I now see 4/4 as a mismatch with modern lifestyle habits. It is, after all, the ancestral gene. Hopefully, in time, you will feel empowered to follow Bredesen's protocol. I personally was quite overwhelmed in the beginning and eventually decided to make changes at a comfortable pace. There is no need to make yourself miserable trying to do it all at once. My functional medicine doctor knows my 4/4 status, but I'm keeping that info out of all other medical records.