Newbie needs advice

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
Berri
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Newbie needs advice

Postby Berri » Tue Feb 12, 2019 10:06 pm

Greetings to all:

I've been reading the Primer (thanks so much) and some of the stories. I am hoping that someone can give advice on how I should proceed. I have the e4 allele (is that how to say it?) plus I have 14 close family members who slipped into dementia in their late 70s/early 80s. I am now 84 and except for losing the occasional name I don't seem to have symptoms. My brother is six years older - his 23andme results did not show e4. He still plays golf and some tennis! My younger brother died of a massive stroke at age 65. My sister died of diabetes complications at age 82.

I have modified my diet considerably but what a huge learning curve. Do most people do Paleo or Ketoflex?

I have sent in the $1400 payment for Bredesen's ReCODE. I found someone to help me figure out the tests but they want $850 for four telephone sessions. Then I suppose there are more costs along the way. I realize it's all cheaper than being in an Alzheimer's facility but I live on a small pension and Social Security. I do have great medical insurance but will I be able to turn in any of these costs and count on being reimbursed?

My biggest question is regarding my regular doctor. She told me in so many words that if it isn't in mainstream medicine, she doesn't believe in it. Therefore, I haven't asked her for any of the tests. Should I? I am pretty sure my Medicare plus my excellent BC/BS would pay reasonable costs. I just don't know how to think about the doctor's mainstream philosophy.

I am very grateful for this website. It's overwhelming enough now but would be worse without you. Thanks!!!

NF52
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Re: Newbie needs advice

Postby NF52 » Wed Feb 13, 2019 12:34 pm

Berri wrote:Greetings to all:

I've been reading the Primer (thanks so much) and some of the stories. I am hoping that someone can give advice on how I should proceed. I have the e4 allele (is that how to say it?) plus I have 14 close family members who slipped into dementia in their late 70s/early 80s. I am now 84 and except for losing the occasional name I don't seem to have symptoms....
I have sent in the $1400 payment for Bredesen's ReCODE. I found someone to help me figure out the tests but they want $850 for four telephone sessions. Then I suppose there are more costs along the way. I realize it's all cheaper than being in an Alzheimer's facility but I live on a small pension and Social Security. I do have great medical insurance but will I be able to turn in any of these costs and count on being reimbursed?

My biggest question is regarding my regular doctor. She told me in so many words that if it isn't in mainstream medicine, she doesn't believe in it. Therefore, I haven't asked her for any of the tests. Should I? I am pretty sure my Medicare plus my excellent BC/BS would pay reasonable costs. I just don't know how to think about the doctor's mainstream philosophy.

I am very grateful for this website. It's overwhelming enough now but would be worse without you. Thanks!!!
A warm hug Berri,

You and your brother are inspirations to this 66 year old! If only I had the talent to play either golf or tennis!

First, let me say that you appear to have gotten past the peak age for people with ApoE 4 to be diagnosed with either mild cognitive impairment (MCI) or dementia (Alzheimer's disease and vascular dementia being the most common types in the general population). The reason that is good news is that is makes it MORE likely that you and your brother have other longevity and health genes that have kept that ApoE 4 in check. For example, your brother who died at 65 of a massive stroke may have had cardiac issues associated with ApoE 4. But you haven't had heart disease or strokes. Similarly, you haven't had diabetes, another possible risk factor.

If you have only one ApoE 4 allele (or gene) you have only a 20-25% chance of getting either MCI or dementia. Think of it as the risk someone who skis a lot might have for a broken bone. It's not huge, but it's probably bigger when they are newer to the sport. By the time someone has been skiing 50 years, they have probably got a lot of skills and resilience to dealing with bad conditions on the slopes. The fact that your brain has been "skiiing" with ApoE 4 for 84 years means it must have lots of built-in capacity and learned resources to compensate for the normal changes in aging (like forgetting the occasional name--something we all do!)

It's certainly possible to develop some cognitive issues in your 80's even if you don't have ApoE 4, but a recent study showed that dementia in the 80's "looks different" than at younger ages, and is more tied to other serious health issues like heart disease, diabetes, history of strokes or head injuries and overall frailty. Doesn't sound like you!

So, as far as your ReCODE payment and the costs associated with that: It's a very personal decision on what is of value to you, and what you can afford without hurting your ability to have a good quality of life--including being able to sleep without worrying about money! I have seen a ReCODE report, and found it fairly easy to understand the big ideas, and the recommendations. I think if your doctor is like mine--someone who is helpful and a good listener, you could take the ReCODE report to her and ask her for her opinion. It could be that something would jump out at her that she'd say "Let's have you try this.." Or she might say everything looks great. Neither the report nor the telephone sessions would be able to be submitted to Medicare or BC/BS. I have a Medicare Advantage program through BC/BS and they don't view these as medically necessary.
So if that's going to be a financial problem, you may want to see if you can cancel. Or get the blood tests and report but not the consultation.

If you just want to good cognitive check-up, you could probably get your own doctor to give you a referral to a nearby Memory Clinic associated with a university teaching hospital. Most medium to large cities have these, and they would be able to tell you if your insurance would cover their thorough assessments. I am in a clinical trial that required me to go through one of those, and while they didn't give me my scores, they do for people who are not in a study. If you find out that everything is okay, it might be a weight off your shoulders at no cost to you !

I hope this helps. Wish we were neighbors; I'd love to have coffee and hear about your life of 84 years!!
Hugs from the state of Virginia--where winter is leaving us alone!
4/4 and still an optimist!

Starfish77
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Re: Newbie needs advice

Postby Starfish77 » Wed Feb 13, 2019 4:03 pm

Hello Berri, we are almost a match in years, I just turned 82. I've been on the site for about five years and am an e4/e4.
When I found out I was an e4/e4 I went for free cognative testing that is sponsored by a major university, the Alzheimer's association and a military hospital. The testing was free and extensive. It took 3.5 hours. They said I could return at any time if I wanted to be restested. I haven't had any loss in memory that would cause me to want to be retested. This testing was free to anyone and I have no military affiliation. It certainly made me feel better. I wanted to have an accurate baseline in case I felt I was declining in the future. A number of the tests Dr. Bredesen suggests are done in regular medical checkups. I've only done a couple of special tests and did those through LabCorp. NF52 did such a good job explaining things about health risks. I try to follow Dr. Bredesen's suggestions about food. Being a part of this group helps me stay reminded and keep my weight in check. The years that I have been part of this group are the most constant I have been in weight for my whole life. I was a yo/yo dieter since age 11 before this group. I've gotten so much from it.
Starfish

Lili
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Re: Newbie needs advice- MIT light study? Preventative Study for 4/4s who are still young

Postby Lili » Fri Feb 15, 2019 10:47 am

Starfish, Hello! I'm thrilled for you that you seem to have, at age 82, no symptoms attributed to your 4/4 result! I, at age 49, was taken by surprise by my own 4/4 result. You give me hope. My mother, 79, was diagnosed with Parkinson's 5 years ago. I had purchased the 23andMe test kit for both my mother and myself because I wanted to know if she (or I) had the gene that predisposes a person to develop Parkinson's. We do not. I have no family history of dementia or AD. However, my immediate family is small, as I am an only child and only grandchild on both sides. The shocker was that my 23andMe results revealed two copies of the ApoE4 gene. I was not aware at the time of the great risk factor associated with 2 copies (I've heard 12 times the chance, or 91% chance at age 68) and I am devastated. You are brilliantly lucky and strong, I assume! Have doctors attempted to uncover some protective factor in your genetics or lifestyle that have prevented this disease? I have three kids who need me. My husband has Fabry disease and now my mother is showing rapidly increasing dementia. The golden lining of this scenario is that my husband does NOT carry the ApoE4 gene, so I know my children have only inherited one copy... from me. My own result, of course, informs me that each of my parents carry at least one copy. My mother could very well have Parkinson's AND Alzhiemers. People like me are PERFECT for preventative studies. How do you arrest the development before clinical signs manifest? I have contacted MIT to see if their cutting-edge flashing light study is possible. Alas, the answer is no.... I'm too darn young! I have always been very physically active, but I am so fearful of losing my mind that I am legally planning my own Death with Dignity with a lawyer so my friends and children can remember their vivacious, dancing, lovely, blonde mom and not the woman that 4/4 can eclipse and morph into a shuffling husk. I can't get on with the fun of living with this 4/4 meteor on its way for me.

mike
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Re: Newbie needs advice- MIT light study? Preventative Study for 4/4s who are still young

Postby mike » Fri Feb 15, 2019 11:42 am

Lili wrote:I was not aware at the time of the great risk factor associated with 2 copies (I've heard 12 times the chance, or 91% chance at age 68) and I am devastated.

Lili, from an other 4/4, the odds are not that high - I've seen 50% lifetime (or by 85) chance if you are 4/4, and that does not account for lifestyle changes. You are still young, and there is lots of time. Take time to breath and to learn. There is much you can do to lower the odds of getting AD. I would start by looking at the Primer: viewtopic.php?f=33&t=1418
Sonoma Mike
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fxmedcoach
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Re: Newbie needs advice

Postby fxmedcoach » Fri Feb 15, 2019 12:20 pm

Lili we need to give you back your "fun of living"! Remember "genes load the gun, our environment pulls the trigger." What that means is just because we have a specific gene (for instance 4/4) doesn't mean we will develop conditions related to that gene. Our environment "dirties" the genes and this is what contributes to them "firing." If we address our environment and clean it up we can often times keep this from happening. As Mike mentioned be sure to look at the Primer, it has lots of good information to help you get started.

For clarification, when we say "environment" we are referring to diet (focusing on whole foods, non-processed diet), exercise (moving a minimum of 15 minutes/week), stress management (identifying where we have stress -- work, relationships, etc. and then finding ways to manage that stress), toxin exposure on the body (think personal care products/makeup, plastic in the kitchen, cleaning products, etc.), sleep (getting a good nights sleep and waking feeling rested), etc. Don't feel like you have to do it all at once. You can choose one small area, and begin to make changes there and once complete move on to the next small area. Some areas overlap. Before you know it you will find that you've worked your way through them all and are well on your way to keeping your genes in check.

So many have shared their experiences on this forum, that I know you'll find learn from their experiences. If you have any specific questions, don't hesitate to ask. Welcome to the ApoE4 community, you will find much information, support and hope here!
Deborrah Cisneros
RN, FMCHC, NBC-HC, CGP

Lili
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Re: Newbie needs advice

Postby Lili » Fri Feb 15, 2019 4:41 pm

Hi Mike and fxmedcoach, Thank you for your replies. It's the first time I have been able to express myself freely about this in a long time. This site, your insight, research and advice is valuable to hundreds and I am thankful to be a part of it!!

Reading the primer now...

mike
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Re: Newbie needs advice

Postby mike » Sun Feb 17, 2019 12:56 pm

Lili wrote:Hi Mike and fxmedcoach, Thank you for your replies. It's the first time I have been able to express myself freely about this in a long time. This site, your insight, research and advice is valuable to hundreds and I am thankful to be a part of it!!

Reading the primer now...

You mentioned that you've been active, and that is great. Exercise is probably THE best preventative measure.
Sonoma Mike
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