Overwhelming anxiety

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
JD2020
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Re: Overwhelming anxiety

Post by JD2020 »

AllTheFeels wrote: Wed Apr 12, 2023 7:13 pm Thank you so much for all of your help and kind words. I’m trying to let go and just focus on exercising and eating better. My last lipid panel showed normal cholesterol and high hdl. I’m hoping it’s along the same tomorrow 🙏
Maybe start here



to read very detailed, personal stories of those who were very sick, got better, and are thriving. You will see that there is a lot of hope.

This program is very comprehensive, expensive, and time consuming. I can't do it perfectly now as a semi-retired 60 year old, and at 34 with young children, it would have been just another stressor. Take it easy and do what you can, make changes gradually so that they become an easy rhythm in your life. You have time.
AllTheFeels
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Re: Overwhelming anxiety

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Just met with my doctor virtually to discuss proactive measures. The appointment lasted all of two minutes and she sent me away with nothing but a referral to genetic counseling. Somehow I feel worse than before. She seemed afraid to even discuss anything with me.
NF52
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Re: Overwhelming anxiety

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AllTheFeels wrote: Thu Apr 13, 2023 2:09 pm Just met with my doctor virtually to discuss proactive measures. The appointment lasted all of two minutes and she sent me away with nothing but a referral to genetic counseling. Somehow I feel worse than before. She seemed afraid to even discuss anything with me.
I'm so sorry that you got a brush-off from your doctor. My guess is that she doesn't know too much about ApoE4.

I hope your therapist has much more ability to deeply listen and support you. Many of us here have spent the last decade, or a good part of it, learning about ApoE 4 so that we can be proactive. No one size fits all for what to do, but what is true is that the more we learn, the more we feel that a good life is within our ability.

Here's something I bet you didn't know: People with ApoE 4 show high levels of verbal intelligence and "executive skills" in planning, organizing, deciding what to focus on. I have two copies of the "scary" ApoE4, yet went back to grad school at age 57 in a challenging program and enjoyed it immensely--and held a one-day a week job while doing it.

I've learned from all my ApoE 4/4 friends around my age of 71, that if researchers only study at people who HAVE or HAD Alzheimer's with ApoE4, you miss all the people who DON'T and NEVER HAD Alzheimer's with ApoE 4. Right now I'm in a clinical trial with about 400 people from 55-80 with elevated amyloid beta. About 70% likely have ApoE 4, yet ALL of us test as cognitively normal--and hope to continue for the four years of this trial. We're not rare zebras, we're just normal people who show it's possible to live with this risk, without experiencing cognitive impairment.

I'm hoping you have a partner, parents, and/or close friends that you can say: "I've just had some news that might not seem a big deal to you but is really upsetting to me. I could use a hug, permission to cry and a good listener right now--no suggestions, just someone to help me carry this news."

If you were my neighbor, I'd be over in a heartbeat.

Nancy
4/4 and still an optimist!
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Re: Overwhelming anxiety

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AllTheFeels wrote: Thu Apr 13, 2023 2:09 pm Just met with my doctor virtually to discuss proactive measures. The appointment lasted all of two minutes and she sent me away with nothing but a referral to genetic counseling. Somehow I feel worse than before. She seemed afraid to even discuss anything with me.
In my experience with practitioners that are not well educated in APOE4 - it's not that they are trying to avoid discussing it or are afraid... they simply just don't know much in this area and feel uncomfortable. If you are interested-it really could be helpful to at least consult with an APOE4 aware practitioner. If your reading the stories and looking at the science... their is clearly hope so just a matter of finding a good expert that can guide you....
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AllTheFeels
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Re: Overwhelming anxiety

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Thank you so much Nancy!

I’m just really feeling hopeless and only can see a future where I end up like my father who started declining in his early sixties. I know that’s not the right mindset but I can’t get past it. I just read the study where I have a 91% risk of Alzheimer’s and that terrifies me.

I’m so sorry to be so down and negative about this. I don’t know how to move past it
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Re: Overwhelming anxiety

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AllTheFeels wrote: Thu Apr 13, 2023 4:52 pm Thank you so much Nancy!

I’m just really feeling hopeless and only can see a future where I end up like my father who started declining in his early sixties. I know that’s not the right mindset but I can’t get past it. I just read the study where I have a 91% risk of Alzheimer’s and that terrifies me.

I’m so sorry to be so down and negative about this. I don’t know how to move past it
No apologies needed!

If you can find that study with the "91% risk", please post a link. I remember reading that somewhere years ago and also freaking out---until I read that it was from 1996 or so (when they did not have biomarkers to tell Alzheimer's from the effects of traumatic brain injury, diabetes, heart disease, etc) and it was in one small Italian city or village with a "convenience sample" of people who showed up at a memory clinic. That's like saying an Ob/Gyn notices that the average age of her pregnant patients with twins is 38 and decides the average 38 year old will have twins, instead of thinking that 38 year olds with twins may have something else in common, like IVF treatment.

Below is the info given to me in the Generation Study in 2017, the first trial of healthy people with ApoE 4/4 ages 60-80. They used data from long-term studies of normal populations. About 2-3% of the people across the thousands of people had ApoE 4/4, which is consistent with other random samples, so these studies probably represented a typical population of people with ApoE 4/4 from my generation or a little earlier.

Note: The term MCI refers to Mild Cognitive Impairment, when subtle changes in memory or language or other advanced skills may be noted on testing or by close observers, but do not interfere with normal activities and independent living. I've known people with MCI who still taught college classes and ran businesses.
We included cognitively unimpaired individuals aged 60–75 yr... [and] elected to disclose the following “lifetime” risks of MCI or dementia to its potential participants: 30%–55% for individuals with APOE-e4/e4; 20%–25% for individuals with APOE-e3/e4 and -e2/e4 (with a note that risk might be lower for those with APOE-e2/e4); and 10%–15% for individuals with APOE-e3/e3, -e3/e2, and -e2/e2 (with a note that risk might be lower for those with APOE-e2/e3 and -e2/e2).

APOE-related risk of mild cognitive impairment and dementia for prevention trials: An analysis of four cohorts.
My husband is ApoE 3/3. He doesn't have zero risk of Alzheimer's, he has about 10-15 % risk. Virtually no one living has NO risk of Alzheimer's if they live to be 85 or older. That means my risk of 30-55% is maybe 3 times his, but I and other people with ApoE 4/4 still a 45-70% likelihood of not getting even mild cognitive impairment. Choosing to live a life with purpose and working to find more strategies to drive this down means my children (and you) face far better odds---nothing like 91%! To put it more bluntly, if your dad had died of lung cancer due to his smoking, you wouldn't be thinking you were doomed; you'd know you are much healthier than he was. The same is true for your brain as would be true for your lungs.

Nancy
4/4 and still an optimist!
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Re: Overwhelming anxiety

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Nancy you are truly a saint. Thank you so much. It wasn’t a study so much as info that populated when I googled lifetime risk of Alzheimer’s with e4/e4. You have been truly so kind and helpful. Thank you again
Last edited by AllTheFeels on Thu Apr 13, 2023 11:04 pm, edited 1 time in total.
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Re: Overwhelming anxiety

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This was the webpage I had seen —
https://isemph.org/APOE4-AD
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Re: Overwhelming anxiety

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Hi All the Feels,

It's overwhelming, it feels like a lot to process and you want to get everything just right.

You've had a lot of support on here already, so I won't repeat.

But... you're 34, you have time to work on this. It's not a race. Small changes in the right direction will be easier to implement and to sustain.

It won't be long before you look back and realise how far you've come.

And you are setting a great example for your kids.

Lindsey
TCHC - Lindsey Byrne - The Cognitive Health Coach - UK
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Re: Overwhelming anxiety

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AllTheFeels wrote: Mon Apr 10, 2023 4:05 pm Just overall feel really down and hopeless. I was just starting nursing school and now feel like what’s the point? Why not just focus on my family? Sorry to be so down.
Have you heard of this book? Brain Energy: A Revolutionary Breakthrough in Understanding Mental Health--and Improving Treatment for Anxiety, Depression, OCD, PTSD, and More by Christopher M. Palmer MD, a leading Harvard psychiatrist.


Available in Kindle version for $14.99, which is what I like so I can highlight and perform searches. In case you didn't know, you don't need a kindle device, you can download the app on your phone or computer.

You might want to read it, anxiety can't be controlled by just willpower.
-Theresa
ApoE 4/4
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