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Neurologist and a 4/4

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
marty
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Re: Neurologist and a 4/4

Postby marty » Tue Dec 27, 2016 2:04 pm

Stavia, I wondered what it is like for him to be the only one there who is that sharp. Does he feel that he's treated as if he's not 100% because of the likely bias of assumption that he's not, or is he a super star there?

SusanJ, my father had some form of dementia in his late 70s, likely Alzheimer's. He still lived independently until 79. Then, he could no longer care for himself. My mother had a severe head injury in her mid 70s due to a car accident that happened when her blood sugar was very low. She was in a coma in the ICU for a day or two then took two months of rehab before she returned home. Her personality returned but her memory was very poor thereafter. However, she'd point out that memory is highly overrated!

Now it is true that those with apoE don't tolerate head trauma as well as others. In my mom's case, her head trauma was pretty bad. She was struck at 45 mph and had several fractures in addition to intracranial hemorrhage.

So like many people, my family history is a little murky. But yes, there's a family history of dementia.

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Re: Neurologist and a 4/4

Postby Tincup » Tue Dec 27, 2016 2:17 pm

marty wrote: I've had no memory disturbances, although now I constantly question myself about trivia as a means of monitoring. I'm guessing others here do the same.


Yes, certainly.

Stavia wrote: Plus a sensible approach to evaluating the evidence - and what to do in the absence of evidence as well.


Marty, one of my good friends and rock climbing buddies is a neurologist. We got to chatting about Dale Bredesen's work. I sent him the links below. His comment - he's not done any RCT's. I said, his approach does not lend itself to RCT (if you aren't familiar, listen to the STEM talk).

So, in my opinion, we live a lot in the land of "absence of evidence..."

Welcome!



Bredesen STEM talk
Bredesen IHS 2016 talk
Bredesen KGNU Shelly Schlender Interview
Bredesen 36 holes in the roof

Bredesen 1st paper, includes the Ver 1.0 table
Bredesen 2nd paper
Tincup
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Julie G
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Re: Neurologist and a 4/4

Postby Julie G » Tue Dec 27, 2016 2:26 pm

Welcome, Marty! Sorry to learn of your 4/4 status, but glad you found us. You're uniquely qualified to help us wade through the evidence. I look forward to learning with you.
My mother had a severe head injury in her mid 70s due to a car accident that happened when her blood sugar was very low.

Sad. Was she diabetic? I used to have similar episodes that were terribly frightening before switching to a mildly ketogenic diet.

marty
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Re: Neurologist and a 4/4

Postby marty » Tue Dec 27, 2016 2:50 pm

My mother was technically pre-diabetic and was over treated.

I've heard Dr. Bredesen speak several times. I think he's doing good work. His approach can be subjected to controlled trials, it just would be hard. And it would be difficult finding funding. Most science involves reductionism, that is, testing a single part at a time to determine function. Bredesen is empiric and inductionistic. He's throwing a lot of things together that may or should help then later judging success. That's good for the patient when it works. From a science standpoint, it's not satisfying. We won't know what helped and what didn't. And we won't know if we used enough or too much of anything.

I applaud him because he's sincerely doing something that may help people now and is reasonably safe. He's smart, too. I could learn a lot from him.

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Re: Neurologist and a 4/4

Postby Starfish77 » Tue Dec 27, 2016 10:36 pm

Welcome Marty, I'm a 79 year old 4/4 female. I've learned so much from the group. We are fortunate to have you on board. We strongly agree with you about the benefits of life style changes. We learn a lot from each others experimentaion with various changes in lifestyle and diet.

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LG1
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Re: Neurologist and a 4/4

Postby LG1 » Tue Dec 27, 2016 10:46 pm

Welcome, Marty! Looking forward to your input. Great to have you here!

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Hepoberman
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Re: Neurologist and a 4/4

Postby Hepoberman » Wed Dec 28, 2016 5:08 am

Welcome to the forum! I know its know its hard to find we carry those old ancestral alleles but you can rest assured there are many 90+ year old 4/4's who still have their wit! I have a feeling you will be one of them.

My 'simpleton' take on how these alleles effect us is two-fold: We are more sensitive to energy overload and more sensitive to lifestyle risk factors than 3/3's. Which I address with diet and lifestyle.

Are you able to articulate some of the peculiarities of how APOE4 mediates intracellular lipid and sterol metabolism when compared to APOE3? I am particularly interested in oxysterol synthesis and sterol efflux pathways.

I sometimes wonder if the Internet has actually helped public education on the matter. Trends are notorious and most health professionals are too busy working with patients and research to attempt a counter online narrative. Its alarming to consider how conventional medicine is being tarnished by the prevailing winds of Internet counterculture. Its as if the public feels like they can't believe anyone. I wouldn't be all that surprised if smoking tobacco came back in vogue!

While I understand the psychology, I, too am amazed at the level of cognitive dissonance abound. I agree fully on the importance of leadership and the propagation of healthy lifestyle memes. I am so excited to have you here!

marty
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Re: Neurologist and a 4/4

Postby marty » Wed Dec 28, 2016 6:52 am

I hope to study lipid metabolism in detail during 2017. There's a pretty extensive course, over 100 hours, I'm signing up for through the National Lipid Association. I completed it earlier but forgot most of it since I didn't use it. Also, the science keeps changing.

I'll report what I learn re: apoe3 and 4. That's not the focus of the course, but it is discussed.

circular
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Re: Neurologist and a 4/4

Postby circular » Sat Jan 07, 2017 9:32 pm

marty I've recently been trying to catch up here a smidgen before diving back into other affairs on Monday. I noticed you as a newer member and have appreciated your posts and perspectives. I thought I'd search for posts by you and see if there was an introduction. We're lucky to have you!

You mention you're starting another trial soon using imaging, and I think you mean in the treatment of Alzheimer's. My mother has MCI (dx for now) and her neurologist told us of a new imaging/treatment research project that involves MCI patients having PET scans paid for by Medicare. My mother has opted in. Just wondered out of curiosity if this is the one you're working on.
ApoE 3/4 > Thanks in advance for any responses made to my posts.

marty
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Re: Neurologist and a 4/4

Postby marty » Sun Jan 08, 2017 9:03 am

Pretty much all major studies have confidentiality agreements to limit divulgence of design of the study. There are different reasons for this, but one of them is to prevent competing groups from unfair advantage. There are egos, patents, and money involved, like in most human endeavors.

What I can say is that the general idea is to create a large bank of people who have biomarkers, DNA studies, cognitive testing and imaging data and who have an interest in possibly becoming research subjects later. When a decent study is designed, these people can be contacted to see if they want to participate.

Other studies I've been involved with were more narrow and smaller. For example, some of them were the antibody trial aimed at amyloid. Those volunteering knew what to expect for the next several years.


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