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Waving hi!

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
Veero
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Waving hi!

Postby Veero » Sun Nov 11, 2018 8:44 pm

Thanks to all of you that have put together and maintained this site. It’s a great deal of work. Here is my essay as introduction.

I have known since last fall my 4/4 status, from a 23andMe Amazon Prime Day sale. What a bargain. And when I say a bargain I mean a blow. I was a mess the first week or 2 -and moments since- I know I’m not the only one here to react like that.

I just came across this site in the last month or two, and through it, Dr. Bredensen’s book. Before this, I had heard about the ‘basics’ of lifestyle aspects of AD prevention (exercise and vascular health, and brain exercise), but not realizing that there was more out there scientifically more focused, on hacking the pathologic process, and some case reports of actual improvement.

Sadly, realizing a possibility of hope for AD treatment has come too late for my father, who died of complications from dementia in 2015 at 78. He had vascular-related brain damage (mini-strokes) but his cognitive declined afterwards so there is a good chance he had AD as well. He was a horticulturist and often worked in fields and forests on Long Island. Between the risk of having been infected with Lyme and some significant ‘partying’ he did after my parents divorced in the 1970’s (chronic syphilis?) I have wondered if his brain was full of spirochetes...

My dads mother died of dementia of unclear diagnosis. My maternal grandfather died with AD, but gladly my mother has so far only suffered mild cognitive decline (forgetfulness) in her early 70’s but is still working and active and a colon cancer survivor. She lives in Appalachia in the mountains. She just bought a foreclosure and is remodeling it since the cabin she built by herself was starting to get too difficult to keep up. Her biggest nod to aging is admitting she can’t lift two boards at a time up a ladder to re-side her house any more, only one.

I remember my paternal grandmother apologizing for giving me her HSV as she had a cold sore kissing me as a child and then I shortly got my own. So It seems that I have the same virus strain that may have participated in her dementia as well as possibly her e4. Great.

I am 51 (female) and have noticed some decline recently in memory, a decrease in my ability to remember and process information, decreased energy and ‘brain fog’. I am perimenopausal so I am hoping some of this is due to that. I was also thinking, that I had a couple amalgam fillings replaced about a year -1.5 years ago and it was not carefully done by my dentist, and some of the filling I believe I ingested - I know my blood level is slightly high so I’m working on that. I eat fish frequently so I am working on keeping it to low mercury species now to see what happens.

I have stress and long-term sleep deprivation as a major factor, which I am desperately trying to manage. I am a specialty veterinarian (dealing with birds and exotic pets) with my own practice, and it requires a huge number of hours and work including an occasional 36 hour work shift if I have a patient that requires care around the clock. I don’t have staff that can provide the care instead of me- hard to find good help. Often it’s 12-14 hour work days on a regular basis, sometimes weeks at a time, and very rarely a day off (none since last January...)

I have not been able to maintain a regular exercise plan for years because of exhaustion and work time commitments and have always had an ‘overweight’ problem, which hasn’t been helped by the stress and schedule, and lack of mobility. I have had increasingly painful foot deformities that have worsened over the years from being on my feet. Before they worsened my fitness was pretty good and I had been able to keep weight off.

So, I am realizing my career and life’s passion is killing me when I realized I am not myself anymore. I took myself off of being on call 24 hours a day, a few months ago so I could get some attempt at a regular sleep schedule. After 27 years of that, I figured I have done my best for my patients.

Knowing the 4/4 was a major expediting factor to get my feet deformities surgically fixed (had been putting off due to time needed to be off of work after the reconstructions they required). I knew if I didn’t return to a regular exercise schedule and had to deal longer with the chronic pain of the foot issue, it was going to be the final nail. Now I am stressing about the past and future anesthesia required to finish fixing them. I had one reconstructed 11 months ago and planning for the other one shortly. It’s a long time to heal.

Besides the concern about stress and sleep deprivation as contributors I routinely get exposed to all sorts of infectious agents. From my patients, from the parasites and bacteria and they carry, and from sneezing children with their parents I’m trapped with in an exam room. The recent data suggesting that amyloid is being produced in response to infectious agent attack is a bit scary in light of my exposures. Also I have secondary exposure to gas anesthesia agents. Sigh.

I am MTHFR heterozygous so knowing that now is useful, I have started methylated vitamins and folate. That’s a new thing that I’ve discovered and my energy levels are starting to come back. Throughout my past and present, my BP has been nice and low, and lipids levels have been okay but TC on low side sometimes - as low as 130 but now at 160. No hint of diabetes but in the past my fasting BG was around 100 - but as I have been reducing my carbs my last one was 92 so that’s improving. Fasting insulin and glycated hemoglobin are good. I have had membranous glomerulopathy (and had been treated via an experimental anti-complement medication which resolved it about 18 years ago) but hadn’t heard any connection with that disease and APOE4 status.

So lots of holes in a leaky roof as people are wont to say around these parts :-)

I am taking a bunch of supplements that I’ve learned about from Dr. Bredesen’s book and this website, and changing from a moderate veggie, whole grain moderate carb diet, low fat high protein diet to a low carb high fat high veggie moderate protein diet. I don’t have a functional medicine physician but I am working with my DO who is willing to work with me to get much of the testing done. So I feel perhaps, somehow, maybe I’m starting to take control of things.

Thanks for reading, and I raise a glass of a healthy beverage to all of us here for the fight.

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CoachJD
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Re: Waving hi!

Postby CoachJD » Mon Nov 12, 2018 8:24 am

Hello Veero and welcome!

It sounds like you have been doing your homework and have taken many steps to prevent AD for yourself! The steps you've already taken have more than likely filled many of the "36 holes" that Dr. Bredesen speaks about, as well as the other interventions you've done to improve the overall quality of your life and health. You have a very demanding job, but it sounds like it brings you joy and purpose, which is so important to our resiliency.

We are all happy that you found this amazing community. Here at ApoE4.info you are surrounded by like-minded, caring and courageous people who are determined to reverse, prevent and stop dementia, AD and cognitive decline in its tracks! As you will also find there is a huge amount of information in these amazing pages. Here are a few highly recommended pages that will give you great places to start taking a deeper dive into the site: the Wiki Page, where you will find some more in depth topics; "How-To get the most out of the APoE4.info website" page, is very easy to use and will allow you to spend your time on the site more efficiently. I also highly recommend the Primer it's a great place to start and to learn more about AD, it was written by Stavia, one of our most active members who is also a doctor, and is E4/E4 herself.

Please remember that family history and genetics are not destiny, just direction. Knowledge is power and you're using your knowledge and awareness to institute helpful changes that can have tremendous positive outcomes! We hope you'll keep us posted on your progress and reach out for help in any way we can be of value to you.
Joan Dickason, FMCHC
National Board Certified- Health and Wellness Coach
Reversing Cognitive Decline For Coaches, CertificationPending Fall 2018
"Pain is inevitable. Suffering is optional " Haruki Muraka

Fiver
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Re: Waving hi!

Postby Fiver » Mon Nov 12, 2018 8:46 am

A wave back from another with a very similar background. Welcome.
Concerned, but hopeful. Introverted, but will talk about science.

NF52
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Re: Waving hi!

Postby NF52 » Mon Nov 12, 2018 1:28 pm

Veero wrote:... I took myself off of being on call 24 hours a day, a few months ago so I could get some attempt at a regular sleep schedule. After 27 years of that, I figured I have done my best for my patients.

Knowing the 4/4 was a major expediting factor to get my feet deformities surgically fixed (had been putting off due to time needed to be off of work after the reconstructions they required)....Now I am stressing about the past and future anesthesia required to finish fixing them. I had one reconstructed 11 months ago and planning for the other one shortly. It’s a long time to heal...I am MTHFR heterozygous so knowing that now is useful, I have started methylated vitamins and folate. That’s a new thing that I’ve discovered and my energy levels are starting to come back...So I feel perhaps, somehow, maybe I’m starting to take control of things. Thanks for reading, and I raise a glass of a healthy beverage to all of us here for the fight.
A warm welcome, Veero,

Like you, I am a 4/4 woman who 15 years ago, when I was 51, was regularly working 15 hours days, losing valuable sleep, not getting exercise and feeling like I wasn't myself. Since I never had hot flashes, night sweats, or other classic signs of perimenopause, I never thought of this as anything to do with my body going through a massive systems change. And of course I didn't know about my ApoE 4/4 status for another 11 years. Like you also, I am facing foot surgery in about 6 weeks to take care of a family curse-bunions--that can no longer be put off, but was able to convince the surgeon to use a regional block and IV sedative instead of general anesthesia. But I have had general anesthesia also on 4 occasions since the age of 5 (as recently as 3 years ago) and have been able to come out of it with no brain fog.

So here's where I would recast your wonderful story in my optimistic terms:

    You have enormous cognitive reserve and resilience from a doctoral degree, years of a challenging profession, engagement with people and their beloved pets, and what sounds like a warm relationship with your mom (who is probably going to get that house in tip-top shape before I ever learn how to hammer even a picture straight!).
    It's possible that ApoE 4 actually helped with all those exotic germs that pets and children shared with you; the research on allergies and on ApoE 4's protective role in people living in parasite-ridden societies suggests as much.
    You have wisely begun to put yourself first--it took me until age 57 to do that. It was only then that I realized how much better I felt and was able to handle challenging information (I went back to grad school to celebrate!)
    You have no chronic metabolic or cardiac issues, and there is some research that women who are overweight (but fit) may have less chance of mortality than those who are underweight.
    Your sly sense of humor comes shining through, and I imagine that you are someone who looks at life with a certain pragmatic, "let's get 'er done" attitude that your outdoors-loving parents supported.
    Like Stavia, the 4/4 author of the Primer who realized that running a medical practice is her passion, but does not have to be her undoing, you have the wonderful opportunity to inform your loyal patients that you will be taking vacations, long weekends and other days off--the same as they do in their roles! Hopefully, an emergency vet service, or a regional colleague can pinch hit, but it is more important that you are at your best for the long term, than working long days for the short-term.
    Stavia recommends pastries in Portugal; I haven't been there, but knowing that she puts that experience as a priority in her busy life (and with a history of two brain injuries) tells me it is wise to value similar experiences.

The How-To" Get the most out of the ApoE4.info website may be a great resource to help you use that powerful brain of yours to search, subscribe, private message and do all the other fun things available on this site.

A hug from someone who is allergic to cats, birds, and rabbits, but who knows that a beagle named "Wilbur" strained the patience of more than one veterinarian, a profession I am grateful exists. We hope you'll grace us with more of your wisdom, humor and experiences.
4/4 and still an optimist!

thjj
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Re: Waving hi!

Postby thjj » Sat Dec 01, 2018 7:49 pm

Waving hi back :arrow: Thank you
· • She/her · • ·
ApoE4/4 status known: 2018 | Born: 1969 | Cognitive Impairment: none

Veero
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Re: Waving hi!

Postby Veero » Mon Dec 03, 2018 9:24 pm

Thanks for the welcoming words everyone. My DO appeased me and ordered a non-contrast brain MRI. There is a < 1cm cystic lesion next to a <1 cm hyper intensity (on FLAIR) in my right temporal lobe so I am trying to get a good neurologist in my plan to let me know what this means. Everything else looks okay. I have no history of significant head trauma (fell and hit my head on the floor in elementary school with no concussion, is about it) but the radiology report suggested head trauma as a possible cause. It looks like next likely step is a contrast study. I understand cystic lesions are common and likely benign. Fingers crossed.

Veero
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Re: Waving hi!

Postby Veero » Mon Dec 03, 2018 11:41 pm

on second thought, this MRI finding confirms my suspicion that indeed, I have been Quantum Leaped into this life and I am just waiting for my holograph assistant to show up to help me.


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