I am panicking and don't know what to do

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Hopeless1
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I am panicking and don't know what to do

Post by Hopeless1 »

I just did a medical DNA test and I scored CT on rs429358, as well as TC on rs669. The test I did told me I had a 6.6x increased likelihood of Alzheimers versus the average person. I'm 27 years old. Is there any kind of treatment I can seek for this or preventative measures I can take? I honestly don't know how to take these results as I am already in a seriously awful position in my life, in depression, with ailing family members, barely any money, likely aspergers syndrome, with a lost tooth that fell out due to buildup of plaque behind an unaddressed dental wire I had affixed since I was a kid, a serious spine injury, and the only thing keeping me going was studying for my Physics degree and the fact I scored 140 on an IQ test. I thought I could take learning about genetic risk scores but now I can't stop shaking. The thought that I'm at super high risk of losing all of that makes me feel like killing myself.

rs4420638(A;G)
~3x increased Alzheimer's risk; 1.4x increased heart disease risk ; increased LDL cholesterol
rs4934(A;A)
2.5x increased risk of Azheimer's and decreased age at onset
rs4934 increases susceptibility to Alzheimer's disease 2.56 times for (A;A) homozygotes


I don't know what to do. I would rather lose my arms and legs than get Alzheimers or Dementia :(
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Re: I am panicking and don't know what to do

Post by NF52 »

Hopeless1 wrote: Tue Nov 28, 2023 9:12 am I just did a medical DNA test and I scored CT on rs429358, as well as TC on rs669. The test I did told me I had a 6.6x increased likelihood of Alzheimers versus the average person. I'm 27 years old. Is there any kind of treatment I can seek for this or preventative measures I can take? I honestly don't know how to take these results as I am already in a seriously awful position in my life, in depression, with ailing family members, barely any money, likely aspergers syndrome, with a lost tooth that fell out due to buildup of plaque behind an unaddressed dental wire I had affixed since I was a kid, a serious spine injury, and the only thing keeping me going was studying for my Physics degree and the fact I scored 140 on an IQ test. I thought I could take learning about genetic risk scores but now I can't stop shaking. The thought that I'm at super high risk of losing all of that makes me feel like killing myself.
Please accept a virtual warm greeting and even a hug from someone who knows what it's like to be depressed, to have family members who are ailing and who may depend on you more than you can handle, and who also knows from close family members and many people what a mixed blessing Asperger's syndrome can be in a neurotypical world that doesn't get it. At 27, I too had almost no money and I had just finished grad school, when I worked at a job I didn't like so that I could manage to pay the rent.

I want to recognize how incredibly strong and resilient you have been throughout your life--and how you continue to set high goals for yourself--like that Physics degree! And I hope you'll be okay with me sharing a reason to keep on living and reaching those goals:

I have two copies of ApoE 4--which I am not sure you have--and I am 71 years old, with a brain that works just fine. I recently came back from a two-week trip to Spain and Portugal, visiting 7 cities, walking 4-7 miles a day with my husband, seeing amazing sights and dining at local restaurants and taking planes, trains, buses, taxis, and BOLT (their version of Uber) all of it planned online using apps for everything. Later this week I will be a Consumer Reviewer for grants focused on helping people with TBI (some of whom also have spinal injuries) with PhDs at the table.

I'm not a genius--I draw like a 6 year old and hate having to keep track of USB-C, USB-A and lightning connections on my devices1 But I am evidence that data based on studies in people your grandparents or great-grandparents' ages has almost ZERO relevance for your life.

The first reference I saw when I found out my ApOE 4/4 status was that the average age of diagnosis was 68! That is no longer true--and we have people on this forum in their 80's who are living with Apoe 4 and doing just fine!

The company you used relied on rs669 as one of their predictors of ApoE 4. That's not what is used on 23&me, and I don't believe it's used on any of the many genetic tests I have had. In fact, here's a reason not to trust that result by itself:
On its own, rs669 was not seen to reproducibly and independently increase risk for Alzheimer's disease in several studies of ~200 Italian patients.
https://www.snpedia.com/index.php/Rs669 Frankly, many early studies of risk relied on people who came to Memory Centers rather than looking at the risk in a regular population. That's would make as much sense as looking for people who are great at Physics in a Physics program (lots!) vs. looking at people who are great at physics in a typical population (not many--especially if I'm included!)

I get to listen to researchers often, since I'm in a research participant advisory board. They emphasize two things:

Prevention is based on things typical people can do: eat a healthy diet, exercise in ways you enjoy, have intellectual or occupational challenges to build up cognitive resilience (you've got that covered!), seek support and treatment for anxiety and depression, which affect about 20% of people at any one time, avoid head injuries (your spine injury doesn't count) and look for ways to manage unavoidable stress by reaching out to friends and a supportive community

Research is light years ahead of what we knew even a decade ago,with advanced imaging, biomarkers, understanding of the role of multiple factors.[/list]. I heard a researcher last month, who is not given to hyperbole, say "We will soon be able to prevent Alzheimer's in millions of people."

You are a very important one of those millions. Please reach out in your local area for some support and think about calling 988: Suicide and Crisis Lifeline
The 988 Lifeline provides 24/7, free and confidential support for people in distress, prevention and crisis resources for you or your loved ones.


We're your family now--and we want you to be here!

Nancy
4/4 and still an optimist!
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Re: I am panicking and don't know what to do

Post by TPE »

Hopeless1 wrote: Tue Nov 28, 2023 9:12 am I just did a medical DNA test and I scored CT on rs429358, as well as TC on rs669. The test I did told me I had a 6.6x increased likelihood of Alzheimers versus the average person. I'm 27 years old. Is there any kind of treatment I can seek for this or preventative measures I can take? I honestly don't know how to take these results as I am already in a seriously awful position in my life, in depression, with ailing family members, barely any money, likely aspergers syndrome, with a lost tooth that fell out due to buildup of plaque behind an unaddressed dental wire I had affixed since I was a kid, a serious spine injury, and the only thing keeping me going was studying for my Physics degree and the fact I scored 140 on an IQ test. I thought I could take learning about genetic risk scores but now I can't stop shaking. The thought that I'm at super high risk of losing all of that makes me feel like killing myself.

rs4420638(A;G)
~3x increased Alzheimer's risk; 1.4x increased heart disease risk ; increased LDL cholesterol
rs4934(A;A)
2.5x increased risk of Azheimer's and decreased age at onset
rs4934 increases susceptibility to Alzheimer's disease 2.56 times for (A;A) homozygotes


I don't know what to do. I would rather lose my arms and legs than get Alzheimers or Dementia :(
Welcome to the site and thank you for posting. Thanks also for your honesty and courage to share what may feel like an overwhelming situation. What I see when I read your post is an intelligent young adult who is using their curiosity and perseverance to find this site and reach out for guidance and support. As evidenced by the warm response from NF52 you came to the right place. We truly are family and I'm glad you found us.
There is so much we can do now preventatively with lifestyle and nutrition to avoid developing dementia even with potentially disadvantageous genetics. Hopefully this group will continue to be a resource for you and I bet you will be a wonderful resource for many.
It may seem overwhelming right now, but when you're ready consider grasping one bit of information or one goal within reach at a time.
I'm in line right behind Nancy to give you a hug. Please keep in touch. We're glad you're here and we want you to stay.
Warmly,
Therese (TPE)
ApoE Support Intern
Daughter of Mother living with Vascular Dementia
Registered Dietitian Nutritionist (RDN)
Functional Medicine Certified Health Coach (FMCHC)
Nationally Board Certified Health and Wellness Coach (NBC-HWC)
Still learning
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Re: I am panicking and don't know what to do

Post by JD2020 »

Hopeless1 wrote: Tue Nov 28, 2023 9:12 am I thought I could take learning about genetic risk scores but now I can't stop shaking.
Hey there,

You are going to be ok. There is a big life ahead of you. Everything is going to change, and change again, and again, and again. We all have many risk factors for many diseases. I think I get an email from 23&Me a couple of times a month telling me that there is a new report about a new genetic risk. As for dementia, I sure as heck wasn't thinking about what to do at age 27. I suspect that you are ahead of all of us in becoming aware at such a young age. As said above, you can play with one goal or address one issue at a time. Knowledge is increasing, pharma might be making progress. You are going to be ok. You have so much time.

At some point, when it feels authentic to you, you might want to change your online name. You might be subconsciously sending yourself the wrong message about the big life ahead of you. It is going to be good.
NF52
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Re: I am panicking and don't know what to do

Post by NF52 »

Hopeless1 wrote: Tue Nov 28, 2023 9:12 am I just did a medical DNA test and I scored CT on rs429358, as well as TC on rs669. ...
rs4420638(A;G)
~3x increased Alzheimer's risk; 1.4x increased heart disease risk ; increased LDL cholesterol
rs4934(A;A)
2.5x increased risk of Azheimer's and decreased age at onset
rs4934 increases susceptibility to Alzheimer's disease 2.56 times for (A;A) homozygotes
Hello again.

I checked my own 23&me raw data to compare to your results. Like you, I have rs4934 (A;A) and I have rs4420638 (GG)--which is at least as "bad" as (A;G). SNPedia does not directly either of those to determine ApoE status: https://www.snpedia.com/index.php/APOE

Some of these genes are linked; so it's not clear that there's an additive risk. I do have a history of high total cholesterol and high LDL cholesterol, and yet I got a score of "zero" on a coronary calcium scan when I was 65 with a note from the center that did the scan that I had a "coronary age of 39". So genes are not destiny; they're only the first page in the story of our lives.

Nancy
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Re: I am panicking and don't know what to do

Post by TCHC »

Hi there

You've already had some great answers to your post, and I don't want to repeat, but I do want to add some more weight to the idea that you're 27, so you have time. Bredesen says that the issues with our lifestyle can start having an impact on our health up to 30 years before we see any symptoms, so whilst it's never to early (or too late) to start, you have found this at an age where you can absolutely do something about this.

Most of us start this journey much later in life, so you are well ahead of the curve, you can afford to take one small step at a time, to make some changes to your lifestyle, slowly, at a pace you can handle given everything else you have to deal with right now, prioritising the things that you can do for free, or cheaply while your financial situation is not so great.

If you've not got the End of Alzheimer's Program book yet, get that and pick just one tiny thing to work on. For example, just cut down on or cut out sugar (or whatever seems doable to you right now) and when that's embedded and you feel ready for the next step, pick something else doable.

In no time at all, you'll be looking back at all the changes you made and feeling better just from having been able to take some control. As you start to feel better, you'll find more energy and motivation to tackle some bigger things.

Do you have someone in your life who could support you in this? Someone who could listen and maybe help you plan and help you with accountability?

I wish you all the very best - take it slow - and keep us informed from time to time how you're getting on

Lindsey
TCHC - Lindsey Byrne - The Cognitive Health Coach - UK
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