jkramer65 wrote:Hi everyone, I am hoping this group is the support I need as I'm going through all of what you all probably have experienced... I'm scared. And I know that I can't let my stress about this get me sick. But right now I'm in a pretty bad mental place about it. This is all very new. Thanks.
Hi Jkramer!
Thanks for a wonderful introduction; I feel like I know you already! Since you used the phrase "you all" twice, I'm thinking maybe you are from slightly further south than my adopted state of Virginia, and have lots of opportunities to enjoy the outdoors year-round. I'm also a 4/4 and a healthy 66, and hope to continue that way for a long time--with no expectation for being a feisty lady like your 92 year old mother. I have known my results from 23 & me for 4 years and had them confirmed multiple times for a clinical trial for people like us ages 60-75.
Like many people on this forum, It was a gut punch for a long time. So you've come to the right place to find people who don't think you rambled at all! And you're right--the good news is that genes are not fate--they are only a small piece of the puzzle. (I'm not suggesting that you start drinking, smoking, give up healthy food, sleep and exercise like your mother, but at 92 she's got some turbo-charged resilience going on there.)
You're also right that since you inherited one copy of ApoE 4 from each parent, they had some level of risk. But you are only a 50% copy of each of them, and a 25% copy of each of your grandparents, roughly. So my guess is there are some protective genes on both sides. Your dad and his brother lived into their late 80's which is actually well beyond what the life expectancy for males of their generation would have been. According to one source, the life expectancy for your dad at birth in 1924 was roughly 56 years. By the time he turned 80 his statistical life expectancy was 85. Here's the source for that:
Infoplease
Alzheimer's is not simply a disease that people with ApoE 4 develop; the risk increases with age for all people, from lots of possible factors, some more under our control than others. A 2017 analyses of 4 large cohorts of people in different cities here and in Europe found a broad range of risk: For people ages 60-75 now, with ApoE 4/4 they have a likely risk of 30%- 55% for either Mild Cognitive Impairment (MCI) or dementia by the age of 85. That means 45-70% of people either sailed past 85 healthy, or had other things that caused their death by that age. And that's not counting lots of exciting developments in lifestyle interventions and drugs to prevent amyloid plaques and tau tangles in the brain.
I figure the more I try to handle the big stuff--reducing stress, getting enough sleep, exercise and healthy foods, limited alcohol, and lots of time for my husband and grandchildren--the more my brain will do its part to keep on keeping on. Some supplements may help, but to get an intro to that whole complicated subject, I suggest browsing the
PRIMER, written by a physician-member, Stavia, who is a few years older than you and also has a strong family history of AD and two copies of ApoE4. Her description of
Simple Steps will help you to feel like you are already doing most, if not all, of what you need to do to stay healthy.
Your sister's diagnosis has to be a terrible shock and sorrow. Even though she is 11 years older than you are, I'm sure you can still remember when she was a true "big sister" in your childhood. It can be very delicate to offer advice to someone who has received that diagnosis. You may want to be more of a sounding board than suggesting specific options for her or her family.
What your sister and her family may want most is for you to be ready to see her still and always as the same person she was, with some changes that you can adapt to handle.
This forum is not part of the
Alzheimer's Asssociation, but they can be a great resource for caregiver support groups and suggestions. Not sure if you are close enough to be involved in giving emotional support to her and her family, but you may want to suggest that they connect with clinical trials for people with early Alzheimer's. You can check those out by zip code in
ClinicalTrialsFinder, which is run by the National Institute on Aging, part of the National Institute of Health. You can also look for trials for "healthy volunteers" through there.
And here's a final bit of advice from "Searcher", one of the wise souls on this forum:
Searcher wrote:The one thing missing, or feeble, in most protocols for preventing Alzheimer's, is emotional well-being... efforts to prevent Alzheimer's can be carried to an extreme where they rob one of a full and meaningful life in the present. It's as if Alzheimer's starts ruining one's life years (or decades) before it occurs. So much remains to be discovered about the intricate mechanisms and interactions in the human body that even those who get all the markers right are not guaranteed to be spared...If fear of Alzheimer's prompts a more full and meaningful life, then it can be a blessing. And most of us could do with a larger helping of blessings.
Be well, Jkramer65. And enjoy that birthday when it arrives!