New Member - Proxy for my Dad

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
cpoz
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New Member - Proxy for my Dad

Postby cpoz » Tue Mar 05, 2019 6:33 am

Hello Everyone! My dad is only 63 years old and was diagnosed with frontotemporal dementia about 6 months ago by the Mayo Clinic. I found out about Dr. Dale E. Bredesen and his protocol through a podcast, Found My Fitness (Dr. Rhonda Patrick). Soon thereafter, I read the book, The End of Alzheimer's by Dr. Bredesen. My dad has followed the Standard American Diet for as long as I've known him, works a desk job as a small business owner (always stressed out), drinks alcohol daily, has depression (takes meds), and smokes medicinal marijuana to help him sleep. I was hoping to get the One-Time Recode Report ($1400) done for him, but the cost is something we're trying to reduce. Hence, the primary reason for posting today......

I heard that the One-Time Recode Report does not encompass all 36 tests that fall under the full exhaustive Recode testing "umbrella". My question is, specifically what are all the tests that constitute the One-Time Recode Report (the one for $1400)? It would be much appreciated, as I've been tasked with finding out how it compares with going to the labs themselves (and not through Bredesen and/or his affiliates). I found this company on this website https://www.walkinlab.com/ to help keep costs down.

In addition, what hierarchy (aka priority) or in what order would you suggest taking the tests? When the test results are in, the plan is to set up an appointment with a local DO that is a certified Recode practitioner that can help start my dad on his new "journey". I welcome all tips and personal advice/experiences on the matter.

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Re: New Member - Proxy for my Dad

Postby TheresaB » Tue Mar 05, 2019 10:48 am

cpoz wrote:In addition, what hierarchy (aka priority) or in what order would you suggest taking the tests?


First, let me welcome you to our community. You said your dad was diagnosed with frontotemporal dementia, I'm so sorry to hear that.

Frontotemporal dementia is different than the type of dementia which ApoE ε4s tend to develop, so I don't know much about it. However, you might still want to read our PRIMER: An introduction to ApoE4, biochemistry, and possible prevention strategies. In the Primer there is an emphasis on lowering insulin resistance, so the tests that measure and indicate that might be first order of business. Insulin resistance is a very common condition and you said your dad has always followed the Standard American Diet which does tend to be high in carbohydrates leading to insulin resistance. In 2015 there was a Forbes magazine article that said half the population in the United States is insulin resistant. https://www.forbes.com/sites/robertglat ... 5d8dd047bd

But of course there's the question of will your father do anything as a result of any tests. Maybe the ones where he'd be willing to make changes should be the first ones to pursue? God bless you for trying so hard to help your dad, but I've witnessed first hand that unless the patient is wants to make changes, habits won't change. I hope whatever tests and strategies you decide on that your dad will cooperate and I wish both of you the best. Don't forget to take care of yourself, caregiving is very difficult/stressful and that can induce health issues in an of itself.
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Re: New Member - Proxy for my Dad

Postby slacker » Tue Mar 05, 2019 11:20 am

Hi cpoz;

I echo TheresaB's welcome to you and her advice. The Primer, written by an MD member, is a great place to start. It includes the author's opinion on lab priorities. Lifestyle changes must be embraced by the individual to be successful. Many of us struggle with implementation (I suspect the silent majority)!

Another member posted what ReCode lab tests she got through AHNP here.

We have a list of other possible Direct to Consumer lab options here. Click the blue title to get to the list options, which is by no means complete. Some states do not allow direct to consumer testing.
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Re: New Member - Proxy for my Dad

Postby mike » Tue Mar 05, 2019 11:47 am

cpoz wrote:My dad has followed the Standard American Diet for as long as I've known him, works a desk job as a small business owner (always stressed out), drinks alcohol daily, has depression (takes meds), and smokes medicinal marijuana to help him sleep.

cpoz, I would also ask how invested your father is in changing his lifestyle? If he is not willing, then testing probably won't help. If he is willing, then there is much you can do without tests. Starting on an exercise program (ask doctor first) is one of the most helpful things you can do for almost any condition - Dementia and Depression included. Medical Marijuana prior to exercise can help with motivation. Change the diet to reduce carbs. Try to eliminate potatoes, rice, grains. Try to get ketones into the diet, since that can help supplement glucose in the brain. Cut down on drinking (replace with THC?). Some studies have shown THC to lower REM sleep, which could hamper memory creation/retention, but does not seem to effect Deep Sleep, which is where much of the brain clean-out occurs and seems blocked in AD.
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Re: New Member - Proxy for my Dad

Postby MarcR » Tue Mar 05, 2019 12:19 pm

After reading the transcript of the excellent Rhonda Patrick / Matthew Walker conversation that TheresaB linked recently, I'm freshly sensitized to the role of sleep in cognitive health. The excerpt below highlights the tendency for damage to concentrate in the prefrontal cortex, which is the front of the frontal lobe that is disproportionately affected as per your father's formal diagnosis. Given your description of your Dad's lifestyle, I think helping him sleep better would be especially fruitful. And perhaps a focus on learning about and improving sleep would make it easier for him to change cherished habits like daily alcohol consumption:

So one of the discoveries that we made back in 2013 was that I was looking at the distribution of this sticky toxic protein called amyloid in the human brain. And what's fascinating is that it doesn't build up in the brain in homogeneously. Amyloid builds up in some parts of the brain far more severely and early in the course of Alzheimer's disease. And other parts actually remain completely uninvaded by this thing called amyloid. In fact, parts of the motor cortex, for example, or parts of the visual cortex, you see almost no amyloid in our Alzheimer's patients. And that's probably the reason why their motor functions and their vision is unchanged.

But one of the earliest places were beta amyloid builds up and then built up most severely in late stages is back, again, in that medial prefrontal cortex that sits right there in between the eyes. Why was I interested in that? I was interested because when we were doing studies where we would map, with all of these electrodes over your head, we would map the deep sleep that you were having.

And we could do some clever mathematical modeling of those deep sleep brain waves. And we could try to triangulate where was the electrical epicenter of those electrical deep brain waves of deep sleep. And it seems as though they come from all over the brain, but the principal epicenter that generates your deep sleep sits right there in the middle part of the prefrontal cortex. It is exactly the same part of the brain that accumulates toxic beta amyloid protein.

Then we've done studies, and other people have done studies before us, that demonstrated, as we age, our sleep gets worse. But just any type of sleep. Especially that deep quality of sleep that we know and we spoke about is critical for saving and learning and retaining new memories. So all of these jigsaw pieces started to get put together in my head. I thought we need to do some studies. Is it possible that the amount of amyloid that you have in the brain in this sleep-generating center, it should directly predict the deficit in the amount of deep sleep that you get? If it predicts the deficit in the amount of deep sleep, it should predict the deficit in your ability to hold on and retain new memories, which is a hallmark cognitive feature of Alzheimer's disease, difficulty learning, difficulty retaining.

So we did the study, and it's exactly what we found. The more beta amyloid that builds up in this central frontal part of the brain, the less the deep sleep that you have. The less amyloid-related deep sleep that you had, the more forgetful you were the next day rather than the more that you remembered. So this was the first part of the Alzheimer's sleep equation, which is that Alzheimer's disease attacks the deep-sleep-generating regions and you have a diminution of deep sleep, which, in turn, blunts your learning and memory abilities and you become more forgetful.

A far more important discovery was made by an another group, far more important than the one we made, which was essentially the reverse direction, which was to say, "Rather than amyloid sort of decreasing sleep, could sleep actually decrease the amount of amyloid that you get?"

And this is a discovery that was made in rats back in 2009, I believe, was the first evidence that was published in science. A colleague, [inaudible 01:24:09], who is out on the east coast at the University of Rochester, and she made two wonderful discoveries. The first was that we've known for a long time the body has a waste sewage system called the lymphatic system. But the brain doesn't have its own lymphatic system. The lymphatic system does not penetrate the brain. So where does all of the garbage, the metabolic garbage go that your brain cells produce? Where is the sewage system for the brain?

And she discovered it. It's actually made up of a set of cells called glial cells, which are these supporting brain cells. And so she called it the glymphatic system rather than the lymphatic system. So your brain does have its sewage system, this glymphatic system, and that's the discovery that she made. Remarkable.

Then, and I'm not quite sure what motivated her to do this, she started to measure how efficient that glymphatic, that waste system was when the rats were awake and when the rats were asleep. And what she found was that it's during deep sleep that these brain cells actually shrink by almost 60% when we sleep. Blows my mind.

Rhonda: Yeah.

Matt: It's almost like, you know, all of the buildings in New York all of a sudden shrink, and it leaves these much greater, large areas for the cleaning crews to come in and clean up all of the metabolic detritus of the city's activity during the day. It's exactly what happens during sleep. And the cleaning solution is what we call cerebrospinal fluid. And through a pulsatile mechanism during sleep, you get a 10% to 20% increase in the bathing of cerebrospinal fluid through the brain, which washes away all of the metabolic byproducts that have been building up. One of those metabolic byproducts is beta amyloid. And, in fact, if you deprive those rats of that deep sleep, you immediately get an increase in toxic beta amyloid.

So now we've linked these two. I'm sorry it's a long story. But if you're not getting Enough deep sleep at night, you're not giving yourself the chance for the kind of good night and sleep clean process to remove the beta amyloid. So more beta amyloid builds up. Where does it build up? Tragically, in the very same regions of the brain that generate the deep sleep that you need to clear out the toxic amyloid. So you start getting less deep sleep, so you get more toxic protein, more toxic protein, less deep sleep, less deep sleep. It's a self-fulfilling prophecy, and it's a nonlinear exponential curve.

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Re: New Member - Proxy for my Dad

Postby Davida » Tue Mar 05, 2019 1:28 pm

Hi Cpoz,

Welcome to the group! I think you will find this community to be a great source of support and encouragement. It sounds like you have taken some very important steps already into helping your father with his care. I'm sorry to hear of his diagnosis.
I too would suggest looking over the PRIMER: An introduction to ApoE4, biochemistry, and possible prevention strategies. It has tons of information, starting with some of the lifestyle changes that would be beneficial to your dad's individual circumstance. His stress level, diet, and perhaps exercise habits. See how he handles the small steps before tackling the more complexed ones. Also, consulting with the local DO sounds like and excellent idea.

I wish you all the best on your caregiver journey. It can be challenging in many ways. Don't forget your own needs as well.
Again, welcome and please keep us informed.
Davida
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Reversing Cognitive Decline for Coaches Certification 2018

cpoz
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Re: New Member - Proxy for my Dad

Postby cpoz » Tue Mar 05, 2019 5:51 pm

mike wrote:
cpoz wrote:My dad has followed the Standard American Diet for as long as I've known him, works a desk job as a small business owner (always stressed out), drinks alcohol daily, has depression (takes meds), and smokes medicinal marijuana to help him sleep.

cpoz, I would also ask how invested your father is in changing his lifestyle? If he is not willing, then testing probably won't help. If he is willing, then there is much you can do without tests. Starting on an exercise program (ask doctor first) is one of the most helpful things you can do for almost any condition - Dementia and Depression included. Medical Marijuana prior to exercise can help with motivation. Change the diet to reduce carbs. Try to eliminate potatoes, rice, grains. Try to get ketones into the diet, since that can help supplement glucose in the brain. Cut down on drinking (replace with THC?). Some studies have shown THC to lower REM sleep, which could hamper memory creation/retention, but does not seem to effect Deep Sleep, which is where much of the brain clean-out occurs and seems blocked in AD.


I wouldn't bother with getting him tested if he didn't want to make changes. I think he needs the facts in stark black and white print AND the precise solution to the "bad" lab values. In essence, the plan is simple, but the execution will be difficult to say the least. This is several decades in the making, but only recently have problems started affecting business decisions and dramatically compromising his ability to effectively communicate. He and my stepmom are in the process of selling the business, so that will be a HUGE stress reliever!

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Re: New Member - Proxy for my Dad

Postby cpoz » Tue Mar 05, 2019 5:58 pm

MarcR wrote:After reading the transcript of the excellent Rhonda Patrick / Matthew Walker conversation that TheresaB linked recently, I'm freshly sensitized to the role of sleep in cognitive health. The excerpt below highlights the tendency for damage to concentrate in the prefrontal cortex, which is the front of the frontal lobe that is disproportionately affected as per your father's formal diagnosis. Given your description of your Dad's lifestyle, I think helping him sleep better would be especially fruitful. And perhaps a focus on learning about and improving sleep would make it easier for him to change cherished habits like daily alcohol consumption:

So one of the discoveries that we made back in 2013 was that I was looking at the distribution of this sticky toxic protein called amyloid in the human brain. And what's fascinating is that it doesn't build up in the brain in homogeneously. Amyloid builds up in some parts of the brain far more severely and early in the course of Alzheimer's disease. And other parts actually remain completely uninvaded by this thing called amyloid. In fact, parts of the motor cortex, for example, or parts of the visual cortex, you see almost no amyloid in our Alzheimer's patients. And that's probably the reason why their motor functions and their vision is unchanged.

But one of the earliest places were beta amyloid builds up and then built up most severely in late stages is back, again, in that medial prefrontal cortex that sits right there in between the eyes. Why was I interested in that? I was interested because when we were doing studies where we would map, with all of these electrodes over your head, we would map the deep sleep that you were having.

And we could do some clever mathematical modeling of those deep sleep brain waves. And we could try to triangulate where was the electrical epicenter of those electrical deep brain waves of deep sleep. And it seems as though they come from all over the brain, but the principal epicenter that generates your deep sleep sits right there in the middle part of the prefrontal cortex. It is exactly the same part of the brain that accumulates toxic beta amyloid protein.

Then we've done studies, and other people have done studies before us, that demonstrated, as we age, our sleep gets worse. But just any type of sleep. Especially that deep quality of sleep that we know and we spoke about is critical for saving and learning and retaining new memories. So all of these jigsaw pieces started to get put together in my head. I thought we need to do some studies. Is it possible that the amount of amyloid that you have in the brain in this sleep-generating center, it should directly predict the deficit in the amount of deep sleep that you get? If it predicts the deficit in the amount of deep sleep, it should predict the deficit in your ability to hold on and retain new memories, which is a hallmark cognitive feature of Alzheimer's disease, difficulty learning, difficulty retaining.

So we did the study, and it's exactly what we found. The more beta amyloid that builds up in this central frontal part of the brain, the less the deep sleep that you have. The less amyloid-related deep sleep that you had, the more forgetful you were the next day rather than the more that you remembered. So this was the first part of the Alzheimer's sleep equation, which is that Alzheimer's disease attacks the deep-sleep-generating regions and you have a diminution of deep sleep, which, in turn, blunts your learning and memory abilities and you become more forgetful.

A far more important discovery was made by an another group, far more important than the one we made, which was essentially the reverse direction, which was to say, "Rather than amyloid sort of decreasing sleep, could sleep actually decrease the amount of amyloid that you get?"

And this is a discovery that was made in rats back in 2009, I believe, was the first evidence that was published in science. A colleague, [inaudible 01:24:09], who is out on the east coast at the University of Rochester, and she made two wonderful discoveries. The first was that we've known for a long time the body has a waste sewage system called the lymphatic system. But the brain doesn't have its own lymphatic system. The lymphatic system does not penetrate the brain. So where does all of the garbage, the metabolic garbage go that your brain cells produce? Where is the sewage system for the brain?

And she discovered it. It's actually made up of a set of cells called glial cells, which are these supporting brain cells. And so she called it the glymphatic system rather than the lymphatic system. So your brain does have its sewage system, this glymphatic system, and that's the discovery that she made. Remarkable.

Then, and I'm not quite sure what motivated her to do this, she started to measure how efficient that glymphatic, that waste system was when the rats were awake and when the rats were asleep. And what she found was that it's during deep sleep that these brain cells actually shrink by almost 60% when we sleep. Blows my mind.

Rhonda: Yeah.

Matt: It's almost like, you know, all of the buildings in New York all of a sudden shrink, and it leaves these much greater, large areas for the cleaning crews to come in and clean up all of the metabolic detritus of the city's activity during the day. It's exactly what happens during sleep. And the cleaning solution is what we call cerebrospinal fluid. And through a pulsatile mechanism during sleep, you get a 10% to 20% increase in the bathing of cerebrospinal fluid through the brain, which washes away all of the metabolic byproducts that have been building up. One of those metabolic byproducts is beta amyloid. And, in fact, if you deprive those rats of that deep sleep, you immediately get an increase in toxic beta amyloid.

So now we've linked these two. I'm sorry it's a long story. But if you're not getting Enough deep sleep at night, you're not giving yourself the chance for the kind of good night and sleep clean process to remove the beta amyloid. So more beta amyloid builds up. Where does it build up? Tragically, in the very same regions of the brain that generate the deep sleep that you need to clear out the toxic amyloid. So you start getting less deep sleep, so you get more toxic protein, more toxic protein, less deep sleep, less deep sleep. It's a self-fulfilling prophecy, and it's a nonlinear exponential curve.



I actually just listened to that entire podcast driving yesterday. It was very informative, even considering how it seems we're beat over the head with the constant "sleep is important" PSA......A big step would be switching my dad to vaping pure CBD instead of marijuana (for better sleep).

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Re: New Member - Proxy for my Dad

Postby cpoz » Tue Mar 05, 2019 6:20 pm

The DO appointment, I mentioned in the OP, will include 90 minutes with her, 60 minutes with a Health Coach, and 30 minutes with a Family Therapist. For this to work, my dad, stepmom, and myself ALL need to go to this, if this has any chance of working. I have an extensive background as a personal trainer and have a genuine interest and knowledge in nutrition (many years prior to Dad's Dx), so this is not all new news to me. This outside "arbiter" will help with the "proximity bias" that exists between my dad and stepmom with myself.

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Re: New Member - Proxy for my Dad

Postby mike » Tue Mar 05, 2019 6:29 pm

cpoz wrote:I wouldn't bother with getting him tested if he didn't want to make changes. I think he needs the facts in stark black and white print AND the precise solution to the "bad" lab values. In essence, the plan is simple, but the execution will be difficult to say the least. This is several decades in the making, but only recently have problems started affecting business decisions and dramatically compromising his ability to effectively communicate. He and my stepmom are in the process of selling the business, so that will be a HUGE stress reliever!

cpoz, once you quote, you can edit out the unimportant parts, like I'm doing here.

I'm not familiar with the all in one testing. Sleep is critical - has he been tested for sleep apnea? How about his diabetes status? A1c and insulin resistance. These are tests his doctor can order and would likely be covered by insurance. Much of dementia could be caused by glucose metabolism problems, so trying a low carb diet could possibly have big effect. Exercise is also KEY!
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