Looking for that balance...

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
Haslk
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Looking for that balance...

Post by Haslk »

Learning about the whole e4/e4 situation last summer put me in a strange place: some days I don't think about it all and other days its about all I ponder. At age 63, having lost one parent to AD, I dove head first into the internet to learn as much as I could about the landscape. I don't think I've become obnoxious, dominating conversations about risk factors, studies, etc. In fact, I don't have anyone at all to dialog with about this which is basically fine. Finding this forum has been huge.

So last night I'm sharing with my husband my plan to explore my homocysteine level and he says, "Gee Karen, you're becoming a hypochondriac about this stuff."

So, how does one walk that line of implementing the information available regarding one's health and becoming hypochondriacal?
(That really is a word...not sure why the red line is there...LOL.)
Nancy
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Re: Looking for that balance...

Post by Nancy »

You are not a hypochondriac. My husband says the exact same thing! I stopped talking about it to him and others for the most part. That's what's so great about this forum. Many of us are alone in this but for the forum. I just try to follow Stavia's Primer the best I can, not always perfectly because I do have lots of other demands on me, so I can't just focus on me and my health constantly. Plus I believe in special occasions, because you also have to live a little. Have you read the Primer? It's reasonable. I also re-read it from time to time, as well as Bredesen's protocol, which is also on this forum. You can do a search for it. We can't expect others to understand, because they aren't reading and learning about it like we are. Maybe it's easier for a retired couple who are very supportive of one another, perhaps, but for most of us, it can be a lonely road without this forum! "Friendship... is born at the moment when one man says to another, 'What! You, too? I thought that no one but myself...'"--C.S. Lewis
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Haslk
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Re: Looking for that balance...

Post by Haslk »

Thanks for those words of encouragement, Nancy...and C.S. Lewis is one of my favorites! Yes, I've read the Primer, though not start to finish. And I've been wonder who or what the Bredesen protocol is exactly...?
As for us, I'm retired, by husband is a psychiatrist who still very much enjoys working...
So, I'm encouraged...and that is a lovely outcome. Thanks again.
Nancy
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Re: Looking for that balance...

Post by Nancy »

Yes, C.S. Lewis is an amazing writer. Well, the Bredesen Protocol can be found at http://www.drbredesen.com.
I try to follow it. I do fall off the wagon sometimes (like very recently during spring break...trying to get back with the program)! Stick with us, kid. You'll be ok!
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Stavia
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Re: Looking for that balance...

Post by Stavia »

Haslk, I have considered this question often and written about it on the forum.

The question for me is how much time and effort I am prepared to spend today to buy the possibility of a healthier future. Of course, the future is not guaranteed so am I spending the present in vain? For me it's all about looking honestly at the price I pay now and deciding if what I am buying is worth it.

What I do today also has to have positive effects now as well as hopefully future-proofing.

I have found a place (after 2 or so years) that works for me by the following strategies
1. I do interventions that make me feel better today - and exercise, sleep, decent diet, stress management all definitely do. So what I do also makes my life better now.
2. I don't fuss over the small print or go down rabbit holes in the literature. This time and effort required is for me too big a price to pay today for uncertain gains
- I believe playing my piano is better for me than delving into small mouse studies. I don't search the literature at all. But if a topic interests me I will research it.
3. If pushing out AD another 5 years means I have to be 100% obsessive now, I'd rather live today. This is a deliberate decision. I can live a happy life now being 80% careful, that's the price I'm prepared to pay at this stage.

Don't get me wrong: I do about 80 to 90% of things right- but the last 10 to 20% I don't think is worth dedicating my present life to. But I was only able to do this and look at balance objectively once I let go of the fear that dominated my life for the first year or two after learning I was 4/4.

If its only a few months for you I can't see how you could have the equanimity to find your balance yet. It takes time to settle in.
I do suggest you spend a few months gathering enough information so that you can make a deliberate decision where you want to set the balance point when you have enough information.
And yes, you need to know about homocysteine. Its rather important.

A comment on the label hypochondriacal. He should know better - this term applies to those who believe wrongly they have a medical condition. Unfortunately e4/e4s have a real significant risk of AD and known inadequate glucose dependent ATP generation from our mitochondria. Please show him this post from a doctor colleague and tell him that's unfair. He is allowed to say obsessive however! But its unfair to mock the real, justified fear of those of us who are e4/e4 and have family history riddled with AD.
Sandy57
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Re: Looking for that balance...

Post by Sandy57 »

Aloha

Nobody can say it better than Stavia. I agree totally with her and have been in medicine my whole life in one form or another.

You will come to a happy space over time. Being concerned about your mortality is real and health care professionals sometimes struggle with the APOE issues when your "healthy" now. It is all consuming at first and like Stavia said, you have to live for the "now" and hope the choices you make today, will also benefit you in the future. Nobody is given a crystal ball or can predict the future so please enjoy your retirement. Look through the forums, read Stavia's posts, pick what battles your want to attack and go slowly. Great people here that are very knowledgeable about APOE issues.

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ru442
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Re: Looking for that balance...

Post by ru442 »

Stavia... could not have said it any better! Haslk, we've all been in your shoes, it does take time but in the end I also chose not to go to far down the rabbit hole. I've made a lot of the choices like Staiva has as a 54 y/o male 4/4, nutrition, exercise, etc., overall leading a much more healthy lifestyle. Do I worry about AD? Certainly... but it is way in the back of my head at this point, considering where the science is going, and the fact that being 4/4 is NOT a guarantee of AD.

Frank.... amen! Just came home from my lipidologist visit, and while he seemed to struggle the last time I saw him, he is coming around and had way more empathy than the last time. We had a great discussion, and he was very interested in the work Dr. Mahley is doing with structure connectors. He also kinda went the route Stavia went... Life is short, take care of the things you can control now, it will make a difference. So just like the choices we have to make for our journey, you also have to pick your battles with your Dr's.
Male 4/4 56 yrs., "Live, Laugh, Love"
Haslk
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Re: Looking for that balance...

Post by Haslk »

Thanks to all for plowing this ground for those of us who are new. Nancy, I clicked on the link you provided and have invited my husband to listen to the presentation Dr. Bredesen makes. And Stavia, I had already noticed your way with words; thanks for sharing some with me. Total agreement with Frank about the great people here and the knowledge base they share.
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Stavia
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Re: Looking for that balance...

Post by Stavia »

Haslk - you will find your place to stand where you feel secure and balanced - its just going to take time. There is no rush.
Haslk
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Re: Looking for that balance...

Post by Haslk »

Just stopping back by to say that my homocysteine levels came out just fine. But one thing led to another and I began to note my GFR (glomerular filtration rate) has been on a downward trend for the past 3 years and now is in the Stage 2 level of chronic kidney disease. This lined up nicely with info from Livewello and Promethease. So, when I go next week to meet my new internal medicine doc, we'll have all sorts of things to chat about...LOL! I think as responsible individuals we need to boldly review our own lab results because it seems to be asking too much for the doctor to take note of changes over time. Sigh.
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