NF52 wrote:Welcome, NikiB!NikiB wrote:... I am a 45 year old woman with four children - 18,13,4 and 2. I’m so worried 24/7 about early onset, etc that I’m making myself sick...Can someone give me a grounding, balanced, straight forward look at reasonable things i can do to be healthy, because this isn’t living and i wish I could just go back in time and unlearn this awful news.
It's hard for our husbands to realize just how much we truly do wish we could "unlearn this awful news". If you're like me 5 years ago and a few of my friends, it took a while to let go of the "why did you ever suggest this?!" feeling. Hopefully, over time, your husband will be the person that you know you can rely on to support you through the rollercoaster parts of this news.
We can't unlearn the "news"; but what we can do is put it into context so that it doesn't make us feel suicidal, hopeless and bereft. So I'll give some bullet points of science, and some personal perspective:
Genes are not destiny. They are turned on and off by other genes, by our environment, and by the complex interactions of millions of lifestyle factors--of which diet isn't unimportant, but isn't all-encompassing either.
The greatest risk factor for any kind of dementia is advanced age, not genes. People with ApoE 4/4 who are between the ages of 60-75 (and thus have a lot of choices already set for everything from college to how many bologna sandwiches we were given as kids) have probably only a 30-55% chance of getting either Mild Cognitive Impairment or dementia by the age of 85. That compares to the risk of Apoe 3/3 people of about 10-15%. APOE-related risk of mild cognitive impairment and dementia for prevention trials: An analysis of four cohorts
Your risk of getting either condition in your lifetime will likely be far less than mine. and I will be 67 in a few months with NO signs of cognitive impairment on batteries of tests given by a research center every 6 months as part of a clinical trial. I know of several women and men my age and in their 70's and even 80's with ApoE 4/4 who are still healthy and living independently--including one who is an ombudsperson for an assisted living facility and another who is working on an environmental law textbook!
Old statistics are almost certainly incorrect statistics. When you read in on blogs or popular news articles that you have a 90% chance of getting Alzheimers, or 9-12x risk compared to other people, just know that some of those articles are using studies like one I saw cited recently on this forum: a 1997 study of 47 families in a small region of Italy, or similar very sketchy statistics. You wouldn't read a 1997 article to pick out a new phone. Don't trust an old article to judge your health risks!
Your parents and grandparents had different risks than you: dirty air, toxic water, high rates of smoking, unhealthy diet, little recognition of cardiac risk. For example, until very recently, doctors didn't worry about high blood pressure unless the "top" systolic number was over 160; this summer a major study showed that for people with other chronic illnesses, keeping systolic pressure at 120 or less extended their cognitive health by about 7 years.
The research around the decades-long processes that lead to a diagnosis of mild cognitive impairment is being funded at more than $ 2 billion a year by the federal government, a huge increase over even a decade ago. That includes multiple studies of lifestyle interventions (diet, exercise and social networks) As a result, multiple lines of cutting-edge research are being developed. Just since 2012, CRISPR technology, a mind-boggling technique to snip out tiny parts of DNA in a gene and replace the with a corrected part, is showing the promise of radically changing how we treat people at risk of serious diseases. It's not yet ready for human trials, but it already being studied in human pluripotent cell lines and in mouse and other animal studies. So long before you have to worry about late-onset cognitive impairment , we will have a much better ability to give you personalized recommendations.
One of our wonderful health coaching interns will be welcoming you soon, but in the meantime, I'd suggest putting down Dr. Bredesen's book for a bit and instead reading Stavia's Primer . She is a doctor and 4/4 member in her late 50's who has written an easy to browse guide to how to live well with this news, and is also clear about what is known and the many things that are not known--those are the ones people here love to debate in forum posts!
She encourages all of us to prioritize a few things first, and you'll be relieved to know that diet is not among them. Don't worry about the firehose of information here, just remember that this is a site devoted to supporting each other as we find our own best path forward. For me, with 3 healthy adult children, and 2 grandchildren, and a great husband and the ability to still read, learn, travel and find purpose in life, ApoE 4/4 is not who I am--it's just a smidgen of what my DNA is.
Hugs from a 4/4 friend, Niki.
A big hug, Nikki. Something about grey November days (and frankly, the demands of holidays) that can make looking for sunny skies and rainbows really tough. I saw your earlier post and replied to it here: Anxiety.NikiB wrote:Checking back in - would love to reconnect. Feeling triggered, anxious and sad today.
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