Hello!

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
michigancrow
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Hello!

Post by michigancrow »

Hi all, it's great to find this group. I've lost many family members on both my mother's and father's side to dementia. After caring for my father for over 10 years, I finally had a genetic test and learned today that my APOE allele is a 3/4. The result was no surprise. If anything, I had suspected a 4/4 with my family history. I'm 55 years old and hoping I can limit my risk with lifestyle changes. I'm definitely looking forward to learning from all of you!
3/4 More relatives with dementia than you can shake a stick at
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HopefulCaroline
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Re: Hello!

Post by HopefulCaroline »

michigancrow wrote:Hi all, it's great to find this group. I've lost many family members on both my mother's and father's side to dementia. After caring for my father for over 10 years, I finally had a genetic test and learned today that my APOE allele is a 3/4. The result was no surprise. If anything, I had suspected a 4/4 with my family history. I'm 55 years old and hoping I can limit my risk with lifestyle changes. I'm definitely looking forward to learning from all of you!

Michigancrow,

Welcome to our community! You are certainly in the right place and we are happy to have you. We are a hopeful group and believe in the power of positive lifestyle choices to make every aspect of our lives better. The Primer is a terrific place to start on the site. The resource was written by one of our physician members and is an introduction to ApoE4, biochemistry, and possible prevention strategies. I would also recommend our Wiki which has 'deep dives' on some of the science, additional information on the Bredesen and Gundry protocols as well as reviews on ApoE knowledgable practitioners. The search function is useful if you are looking for something specific.

Please let us know if there is anything we can help you with and I am sure your experience caring for you father will help others as well.

Sincerely,
Caroline
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Sara
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Post by Sara »

Greetings michigancrow and welcome to the apoe4.info site! Dementia has really impacted your life. Your desire to get tested and claim your results is commendable. We are here to help you limit your risk with lifestyle changes. Please tell us more about yourself, what changes you have already made and how we might be of service to you. Warm Regard, Sara
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Surviving loved one who transitioned with AD
michigancrow
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Post by michigancrow »

Thanks Sara and Caroline!
I finally summoned the courage to have my test after discovering and reading Dr. Bredesen's book. It gave me a lot of hope to realize my lifestyle choices can make a difference.

That was around Thanksgiving. Since then, I've focused on eliminating stress and getting lots of sleep. My weight's okay, but I've been trying to eat more vegetables. I joined Noom and that's helped a lot. I have a history of insulin resistance, but I got it under control at age 40 through consistent exercise and have been fine ever since. I don't exercise as much as I used to, but I do get in my steps every day! I also asked my doctor to do some blood tests to check my inflammation and hormone levels. My inflammation tests looked good, but I'm on hormone supplements now. I've been taking B vitamins and other supplements. Guess that covers it! I've been considering whether to have a cognoscopy ... I feel like I've already implemented a lot of changes kinda quickly so I'm giving myself a little time to let my new habits solidify, but maybe will look into that this summer.

Thanks for offering. At this point, I'm just getting a lot out of reading others' posts. It's great to connect with people who are in the same boat. Taking care of a loved one with Alzheimer's can be very isolating. None of my friends understand it. It's heartbreaking to lose a loved one by degrees. Plus the whole time I'm caring for my father, I'm wondering how long before I go down the same road, how long until I can't live alone, when should I retire knowing I may only have 10-15 years of independence left, etc. It's a cruel disease that way.

I guess one question I have is whether there are tests that show physical brain changes ahead of the development of symptoms. I'd love to have a way of measuring whether what I'm doing is making a difference.
Kelly
3/4 More relatives with dementia than you can shake a stick at
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Re: Hello!

Post by NF52 »

michigancrow wrote:...Taking care of a loved one with Alzheimer's can be very isolating. None of my friends understand it. It's heartbreaking to lose a loved one by degrees. Plus the whole time I'm caring for my father, I'm wondering how long before I go down the same road, how long until I can't live alone, when should I retire knowing I may only have 10-15 years of independence left, etc. It's a cruel disease that way.

I guess one question I have is whether there are tests that show physical brain changes ahead of the development of symptoms. I'd love to have a way of measuring whether what I'm doing is making a difference.
Kelly
Hi Kelly!
You have done so many things right, in the last few months and in the whole of your life! And you have also realized that both your experience with your father and your knowledge of your own ApoE 3/ status is hard to explain to others who haven't experienced either dementia in their loved ones, or the knowledge of an undefined, and still poorly understood risk. So as someone who is 67 and ApoE 4/4, watched her dad die of cardiac arrest at 67 and her mom die with heart disease and moderate dementia as the youngest of 5 sisters who also followed that path--I get it. And so do many people on this site, which is why this is a safe place to feel and share a whole range of emotions.

So let me offer some information that I think is well-sourced:
1. You have more than 10-15 years of independence left. The risk of diagnosis does increase after age 65, but it is still a low incidence. The current accepted model for research studies is that AD has a decades-long prodromal (latent) period, during with little or no amyloid-beta (toxic amyloid) is in the brain, and it is NOT at an elevated level. During this time, no toxic tau is evident, the person shows no subtle (or not-subtle) loss of skills on sensitive neuro-psychological tests, and has no subjective memory complaints or functional impairments.

Even AFTER someone has amyloid beta in their brain, they often have decades without showing cognitive or functional changes, which is why about 30% of autopsied brains show amyloid pathology in people who were clinically viewed as "normal".
That's why you should not worry about a PET scan for amyloid: It won't tell you anything, and is only recommended as part of research studies.

2. Your chance of having a diagnosis of either Mild Cognitive Impairment (MCI) or Alzheimer's (AD) if you were my age and not yours, would be about 20-25% by the age of 85 (which is used because it's the average life span for someone my age) according to a 2017 meta-analysis of four large cohorts in this country and the Netherlands. Here's a quote with information given to me as a participant in the Generations 1 clinical trial of healthy Apoe 4/4 people:
The Generation Study elected to disclose the following “lifetime” risks of MCI or dementia to its potential participants: 30%–55% for individuals with APOE-e4/e4; 20%–25% for individuals with APOE-e3/e4 and -e2/e4 (with a note that risk might be lower for those with APOE-e2/e4); and 10%–15% for individuals with APOE-e3/e3, -e3/e2, and -e2/e2 (with a note that risk might be lower for those with APOE-e2/e3 and -e2/e2). These values are consistent with our findings, but use round numbers for intelligibility, and broader ranges to reflect statistical and other sources of uncertainty.
https://journals.plos.org/plosmedicine/ ... ed.1002254

You are in a great position to plan for the next decades of your life: when and how you want to enjoy retirement, how you want to keep engaged in purposeful activities during the years in which you may be moving to less stressful or part-time work, what you want to prioritize for your commitments (the "it's okay to say no to requests to run things" stage").

So enjoy learning that you can plan your future and it won't be the one your dad experienced.
Hugs from a genetic older sister.
4/4 and still an optimist!
mike
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Re: Hello!

Post by mike »

michigancrow wrote:I guess one question I have is whether there are tests that show physical brain changes ahead of the development of symptoms. I'd love to have a way of measuring whether what I'm doing is making a difference.
Kelly
Kelly, there is often neuron loss decades prior to the onset of AD symptoms. You might have an MRI done to see where you stand... My insurance paid for it, but it might run you around $600 or so if they don't.
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Re: Hello!

Post by michigancrow »

Thank you NF52 and Sonoma Mike. It's really encouraging to hear from you. I've been brave while watching several of my family members succumb to this disease, but as I get closer to it myself, I'm honestly very frightened. I'll look into the MRI.
3/4 More relatives with dementia than you can shake a stick at
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Re: Hello!

Post by NF52 »

michigancrow wrote:Thank you NF52 and Sonoma Mike. It's really encouraging to hear from you. I've been brave while watching several of my family members succumb to this disease, but as I get closer to it myself, I'm honestly very frightened. I'll look into the MRI.
Hi again!

I'm glad our responses were helpful. (I don't call them "answers" because so much in cognitive health and Alzheimer's research is complex that simple "answers" are hard to find!) I would suggest holding off on looking for an MRI. Unless you have strong symptoms of subjective cognitive impairment (recognizing you're not able to do key tasks in your job, or your home life) an MRI is unlikely to tell you much at age 55. It does not show your amyloid status, for example--that's only on PET scans.

Just a few days ago I was part of an advisory board of participants who have been in a variety of Alzhiemer's prevention clinical studies and are working with scientists to make such studies ethical, with participants from diverse populations and structured to answer key questions as rapidly as possible. I found out that "loss of neurons" usually happens years after other biomarkers like amyloid-beta and tau tangles are seen on PET scans. Loss of neurons without either amyloid or tau would be more likely to be seen in some other conditions such as post-traumatic brain injury or hypoxia (loss of oxygen) as in near-drownings. I have had several MRIs over the last three years, and all have shown no changes from normal brain health--even though as a 67 year old woman with ApoE 4/4 it's likely I have some amyloid.

There may be clinical trials coming out that will "reach down" to people with ApoE 3/4 who are in the 50-60 year old range in the next year or so, to try to screen those who might have elevated levels of amyloid or tau to target. If so, you could investigate those and be screened and get an answer about your brain health and cognition--for free!

In the meantime, I wish I could introduce you to the judge in her mid-70's who is also ApoE 3/4 and happily working full-time, playing the cello in her free time and refreshing her Spanish and French by reading novels in those languages! She's a great example of how living well, and having lots of interests, may be the best "medicine" for our brains.
Last edited by NF52 on Tue Feb 11, 2020 1:26 pm, edited 1 time in total.
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mike
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Post by mike »

NF52, I'm unclear what you are saying here:
NF52 wrote:I found out that "loss of neurons" is not years after other biomarkers like amyloid-beta and tau tangles are seen on PET scans.
There are studies that show loss of brain size in people likely to get AD later in life (either EOAD genes or ApoE4) without having AB and/or Tau. Also, AB is now proving to not be the cause of AD, but rather sometimes a symptom.
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Post by NF52 »

mike wrote:NF52,..There are studies that show loss of brain size in people likely to get AD later in life (either EOAD genes or ApoE4) without having AB and/or Tau. Also, AB is now proving to not be the cause of AD, but rather sometimes a symptom.
Hi Mike,
It is certainly true that measuring neuron loss and brain atrophy in Alzheimer's disease and other dementias is important. As one group of researchers recommended in 2016:
To be an effective tool in cognitive aging research, a biomarker classification system must include all possible biomarker profiles and all individuals in the population. For example, classification schemes that require Aβ [amyloid beta] positivity do not classify individuals who are Aβ negative but positive on tau or neurodegenerative biomarkers, yet the latter biomarker profile is common
A/T/N: An unbiased descriptive classification scheme for Alzheimer disease biomarkers

So amyloid beta plaques, tau tangles and loss of neurons or atrophy in brain regions can all be seen in Alzheimer's disease, and in other types of dementia. But my concern for saying that neuron loss is seen decades before Alzheimer's is that it doesn't seem to be what researchers are finding.

Atrophy seems to be a possible signal of other types of brain disease and is considered "non-specific" as a predictor of Alzheimer's disease. This is from the same article:
Atrophy and hypometabolism involving AD-like regions occur in a variety of disorders and are the least specific for AD. Atrophy...occurs in...cerebrovascular disease, epilepsy, anoxia, hippocampal sclerosis, TDP-43-opathy, primary age-related tauopathy, chronic traumatic encephalopathy, argyrophilic grain disease, and non-AD primary tauopathies such as progressive supranuclear palsy and Pick disease...This...finding of abnormal FDG-PET and structural MRI (and CSF t-tau) in non-AD conditions—...has been labeled suspected non-Alzheimer pathophysiology (SNAP)
Predicting Alzheimer's disease progression is a January 29, 2020 article from the National Institute on Aging on the time progression for amyloid, tau and neuron loss in classic Alzheimer's disease (which doesn't mean any of these are causing the
disease--they are considered "biomarkers" in the same way that a high glucose level may be biomarker of insulin resistance, not the cause of it:
The brains of people with Alzheimer’s disease have two distinct hallmarks. These are abnormal clumps called amyloid plaques and tangled bundles of fibers called neurofibrillary, or tau, tangles. These changes disrupt nerve cells and eventually cause them to die. The loss of brain tissue destroys memory and thinking skills and, eventually, the ability to carry out tasks of daily living.

A 2019 study of thousands of people looked at what were the biomarkers at various stages. Were cognitive changes first? Or tau and amyloid elevation first? Or neuron loss?

Multi-study validation of data-driven disease progression models to characterize evolution of biomarkers in Alzheimer's disease
Seven independent data cohorts were considered totalling 2389 cognitively normal (CN), 1424 mild cognitive impairment (MCI) and 743 Alzheimer's disease (AD) patients... Cross-sectional information related to clinical, cognitive, imaging and cerebrospinal fluid (CSF) biomarkers was used.

[The] first biomarkers to become abnormal were those related to CSF, followed by cognitive scores, while structural imaging showed significant volumetric decreases at later stages of the disease progression.
https://www.sciencedirect.com/science/a ... 8219303043[emphasis added]

As a non-scientist, I am not pretending to understand all the pathways to AD. A researcher in the field told me last week that "we don't yet have the ability to predict if or when any one individual, even one with ApoE 4/4 and a family history of AD, will develop MCI or AD". She added that imaging studies, especially those with PET scans of tau and amyloid and very sensitive tests of cognitive functioning (not just a MOCA or MMSE) are still being evaluated in healthy people, so that some day clinicians can predict individual risk.

So I'm reluctant to suggest someone spend $1500 on an MRI that may not show whether their brain shows a difference from the "norm" for their age, or a difference from their own brain 1, 5 or 10 years ago.

If we get to that point, I would hope insurance would pay for it. In the meantime, I'm a great believer in lifestyle interventions!
4/4 and still an optimist!
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