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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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Neurologist and a 4/4

Postby marty » Tue Dec 27, 2016 11:59 am

Found out about my 4/4 from 23andme. My wife is heavily involved in genealogy. We all sent in our DNA.

She's 3/3. All four of our kids are 3/4. It was then no surprise that I'm 4/4.

I'm starting to focus on Alzheimer disease in a new way. Lots to learn.

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Stavia
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Re: Neurologist and a 4/4

Postby Stavia » Tue Dec 27, 2016 12:06 pm

Hi Marty and welcome. Yes it is a shock, we all know how it feels.
I have written a primer for the beginner which may help.
viewtopic.php?t=1418
Tell us more about yourself?

marty
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Re: Neurologist and a 4/4

Postby marty » Tue Dec 27, 2016 12:48 pm

I'm sure where to begin. The recent learning of my E/E status got my attention.

An irony is that I've helped complete seven clinical trials in the treatment of Alzheimer's and am starting another on imaging soon. I'm not a well rounded expert on dementia and am more of a researcher. But I'm broadening my knowledge quickly.

My primary professional interests have been in lifestyle medicine and, to a degree, lipidology.

I'm fortunate to be in a position in which I have some control over my direction at work. I intend to learn as much as I can about prevention of dementia. I know this much already: Much of what is believed today will not stand the test of time, and there are many false trails out there beckoning.

On a personal level, my family mostly dismisses the concern about apoE4. They are informed enough but don't worry that much.

Most people are like that really. 80-90% of premature mortality is due to lifestyle factors that could be changed. These changes are not really secrets. Yet only a fully implement them.

Here's my soapbox message: education is necessary but sorely insufficient for meaningful change in behavior. Role models and coaches are essential.

I have read quite a bit on this forum and find it very valuable. It seems open and fair in the discussions.

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ru442
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Re: Neurologist and a 4/4

Postby ru442 » Tue Dec 27, 2016 1:00 pm

Welcome Marty!

You'll find a boatload of information here, and you will also find we all have similar but varied approaches to our protocols. As to the lifestyle changes, totally agree that it is easier to look the other way (more of a western thing.... we've been trained to believe there is a med for every ailment!). I think we have a thread on a research paper being done on exactly that topic, what peoples reactions and emotions are having learned they have an apoe4 gene, and what can doctors etc. do to help educate and help us to deal with it (I don't have the thread handy.... will post if I find it). I believe a couple folks volunteered and were interviewed.

Ask lots of questions, you'll get lots of answers and different perspectives which is what makes this a great place to be!

RU
Male 4/4 56 yrs., "Live, Laugh, Love"

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Stavia
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Re: Neurologist and a 4/4

Postby Stavia » Tue Dec 27, 2016 1:01 pm

Aha sorry! I have just woken up across the world from you and only now realise you are the neurologist! The first thing I do when waking is check for posts that needed aporoval. Sorry:(

Oh dear. It does make it scarier huh. I provide medical care to a 200 bed aged care facility every Friday plus night and weekend call. I'd say 199/200 have dementia. I understand exactly how you are feeling.

And yes I totally agree about stuff today being viewed pretty much akin to the dark ages in a couple decades or more.

And yes peer support is crucial in maintaining healthy interventions. That's what we try to provide here. Plus a sensible approach to evaluating the evidence - and what to do in the absence of evidence as well.

I look forward very much to your contributions to our discussions.

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Re: Neurologist and a 4/4

Postby marty » Tue Dec 27, 2016 1:09 pm

Stavia,

I wonder what life is like for that 1/200 without dementia.

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Re: Neurologist and a 4/4

Postby ru442 » Tue Dec 27, 2016 1:27 pm

Marty here is the link I referred to:

viewtopic.php?f=15&t=1497&hilit=interview
Male 4/4 56 yrs., "Live, Laugh, Love"

marty
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Re: Neurologist and a 4/4

Postby marty » Tue Dec 27, 2016 1:33 pm

I'll add a little more about me. I'm in my early 60s. 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.

Learning my apoE status has changed how I view life. I've known for only a few months, so the changes in attitude are still maturing. I objected to knowing at first because I didn't ask for that knowledge and in no way prepared for the answer. Now, it's not so bad. It just is.

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SusanJ
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Re: Neurologist and a 4/4

Postby SusanJ » Tue Dec 27, 2016 1:34 pm

Welcome, Marty. You'll find us a bunch of curious, motivated and empathetic souls, so feel free to throw anything out here.

Just wondering if you have any Alzheimer's your family. When I found out, it was like, oh sh%#, but no surprise since AD has been in my dad's family.

Look forward to your insights from your work perspective.

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Stavia
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Re: RE: Re: Neurologist and a 4/4

Postby Stavia » Tue Dec 27, 2016 1:36 pm

marty wrote:Stavia,

I wonder what life is like for that 1/200 without dementia.

He's amazing. 95 years old and still working. He designed a special xylophone for schools and still makes them. Slowly, but hey, he's very old. He unfortunately tripped and fractured a hip which is inoperable so we thought he'd never walk again but he is after self-directed rehab with a walker and a built up shoe to level the resultant leg length discrepancy as the bone healed shortened and is about to go home again. He types me beautiful missives with inserted appropriate little pictures.
I want to be him when I grow up.


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