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Got stuck, any suggestions?

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
Sam-J
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Got stuck, any suggestions?

Postby Sam-J » Wed Nov 20, 2019 11:03 am

Hi everybody,

This is my first post in the forum but I've been reading it for quite a while. First of all, thanks to all the contributors that run this forum for helping us deal with a so devastating disease like Alzheimer. I take care of my 69 year old Mother who is has one copy of APO4 and was diagnosed with MCI. I have to say we have been blessed to find Dr. Bredesen's book and stop Mom's cognitive decline, however I also think we have gotten stuck so it occurred to me that this forum would be a good place to ask.

I've first noticed the first deficiencies in Mom's memory about 4 years ago but I didn't suspect of Alzheimer until 2 years later.
Mom first started noticing her own memory problems when she realized she couldn't remember groceries she purchased the day before. At first, she got very upset and sad but we didn't have clue why her memory was declining. As the months and years went by, she just became very forgetful, to the point of no remembering if she had breakfast or lunch. Furthermore, that became so usual that Mom got used to be forgetful and didn't care about it anymore.
I first panic when I saw at what speed Mom's memory was deteriorating, I read everything I could find on internet until I found Dr. Bredesen's book. Learning about ReCode gave me tremendous hope and we started the protocol on own first and later found a practitioner which also helped us a lot.

Mom's initial blood labs showed the expected abnormalities, besides having one copy of epoe4, she was pre diabetic, her cholesterol was high and had many vitamin deficiencies.
So I helped Mom as much as I could to follow ReCode protocol, it's been two years and she has lost about 30lb weight, her blood sugar went from pre diabetic to normal (I should say, it was very hard to lower her glucose and insulin even with diet but Metformin and alpha lipoic helped a lot).
Mom's memory has stopped declining about 1 year ago which has been a blessing but on the other hand, she hadn't been able to improve her cognition or reverse it back to how she was 4 years ago.
The ReCode practitioner has no much expectations that Mom will get better than that and told me that keeping her in her current state (MCI) is victory already Alzhaimer is a progressive disease and I agree.

However, I also feel no totally satisfied with Mom's current cognitive state and I wish she could improve further. In her current state, she is still very forgetful, most of the times forgets the meals she eats in the day, so of course she is not able to handle the ReCode protocol on her own. Also, nowadays she doesn't fully acknowledge the memory issues, four years ago she was willing to take action on her memory issues but now, as the become so frequent, she tries to hide the them rather than fixing them.
I invest as much time as I can taking of Mom since I have no siblings and we both live along, but I am afraid that if I am not there to make sure she follows ReCode, she will decline further.

I know that full reversal is not always possible however I am still think that I haven't done everything possible. For instance, Dr. Bredesen recommends in his book to tweak and modify the protocol if getting stuck. He recommends to check sleeping, diet, stress levels, physical and mental exercise, etc and I think Mom has all those covered (She does 2 or 3 days of aerobics class per week, follows a keto diet as best as she can do and has no sleeping problems)
The only thing Mom perhaps is missing, is mental exercise. That is very hard to do for her since this disease made her mental energy very limited, specially when it comes to learn something new or solving a puzzle. Besides Mom has lost all her old hobbies (cooking, knitting, etc) and her only entertainment is TV watching. Therefore, I am afraid that the little mental activity she does in the daily bases, is just putting her at more risk to decline further so whenever I can, I try to make her do a reading or playing a board / card game (we tried apps but she doesn't like them).

Dr. Bredesen's book also recommends various herbs and supplements to improve mitochondria energy and mental focus. We tried Panthotenic acid, ashwagandha, L-carnitine to mention a few but I didn't see that any of those supplements made a difference or probably I didn't see the effect I was expecting. For instance once thing I saw improves Mom's mental energy is coffee but that doesn't last too long and I wouldn't want her to abuse coffee because it could affect her sleeping.

So I just wish Mom's her cognition and mental energy could improve a little bit more so she can defend herself better against Alzheimer but I feel that we got stuck. I am trying different nothing is working yet. As I said, it's been almost two years and things hadn't change. So I am curious if others here are experiencing similar situation with their loves one and any suggestions for improvement are welcome and very appreciated.
Thank you for reading!

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Sara Mushel, MS
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Re: Got stuck, any suggestions?

Postby Sara Mushel, MS » Wed Nov 20, 2019 7:52 pm

Hi everybody,

This is my first post in the forum but I've been reading it for quite a while. First of all, thanks to all the contributors that run this forum for helping us deal with a so devastating disease like Alzheimer. I take care of my 69 year old Mother who is has one copy of APO4 and was diagnosed with MCI. I have to say we have been blessed to find Dr. Bredesen's book and stop Mom's cognitive decline, however I also think we have gotten stuck so it occurred to me that this forum would be a good place to ask.
Hi Sam-J,

Thank you for sharing your story with us! This forum exists because of contributors like you that are willing to share their experiences - your doing so allows us to learn, process, and share triumphs and challenges together. Your love and concern for your mother is clear and I hope that we can provide you with some comfort and helpful advice. I admire your perseverance in your role as caretaker to help her stay accountable to the recommendations in her Report. That is no easy task, and you should be proud of all that you have done for your mother over these past four years, which started with your love of learning and pursuit for a solution with the Bredesen Protocol.

It's wonderful to hear that you've had good luck with your mother's ReCODE Practitioner with regard to stabilizing her condition over the past year. I also recognize and understand your frustration with the lack of continued progress and hope for reversal of her symptoms. It sounds like a few factors have appeared to be successful, like diet changes, adequate sleep, and exercise routine, but you'd like to see improvement in her mental exercise.

Just a few thoughts:

Are you aware of the monthly Reverse membership through Apollo Health? It costs $75/month for a one year commitment and includes several resources (diet, sleep, exercise, ketone meter guidance, etc.), monthly town halls with Dr. Bredesen and other patients and caregivers, and mental exercise practices like Brain HQ (an app, which you mentioned your mother isn’t interested in), and RevitaMind, which is theta-wave sounds used to improve mental agility.

Another recent development through the Bredesen Protocol and their partnership with Apollo Health is personalized supplements through Life Seasons. Those that get a Report receive recommendations on specific supplements based on their type of Alzheimer’s and other factors, like nutrient deficiencies, etc.

If you don’t mind sharing, what type of Alzheimer’s was your mother identified as having? What comes to mind for me is that perhaps, to use Dr. Bredesen’s analogy, a certain hole hasn’t been identified yet. For example, type 3 Alzheimers is often associated with some type of environmental toxin or viral trigger, such as mold, heavy metals, or lyme disease.

Again, I just want to commend you for all that you have done for your mother. It is clear that you care deeply for her and wish to see parts of the old version of her again before the memory loss. Importantly, you have hope that it still might be possible! She is lucky to have you. Although she may not regain the memory that she once had, I suppose at this time of year it’s good to be thankful for what we do have; for most of us, it’s our loved ones that matter most.

It sounds like you're familiar with the forum, but just in case you haven't come across these resources yet, the Primer, Welcome, and Wiki pages are great places to start. The search icon (magnifying glass in the menu bar, top right) is also a useful tool to find specific threads on topics that you're interested in exploring.

Please keep asking questions, Sam-J. We are here to help and support you along the way.

Sara Mushel

Sam-J
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Re: Got stuck, any suggestions?

Postby Sam-J » Fri Nov 22, 2019 2:45 pm

Hi Sara,
Thanks for much for taking the time to read and replying, for your kind words and encouragement.

Responding to your comments, we were initially members of Apollo Health ( I believe before it became Apollo) and yes it was nice to have access to the Dr. Bredesen videos and all the information in the site. Mom actually got her first report from the Bredesen website. So I am planning to enroll again since they must have a lot of new information.

To your second question, I believe Mom is under the Alzheimer type 1 and 2 (glycotoxic) categories, since she fits most of those symptoms. And yes probably there is a hole that we didn't identify yet. I've been thinking about it but failed to find it. So I am considering to go find another Bredesen Practitioner so I can have a second opinion on my Mom's case. Any recommendation? (We are located in SF Bay Area)
Thanks again Sara.

Sam

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JML
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Re: Got stuck, any suggestions?

Postby JML » Fri Nov 22, 2019 10:13 pm

Sam-J wrote:So I am considering to go find another Bredesen Practitioner so I can have a second opinion on my Mom's case. Any recommendation?
Hi Sam-J--Have you checked the ApoE4-Aware Practitioners List in the Wiki? If you don't find anyone there, you can also check out this Wiki entry on Searching for a Healthcare Practitioner. Hope that helps.
Julie
Daughter of 4/4
Functional Medicine Certified Health Coach
National Board Certified Health & Wellness Coach
ReCODE/Bredesen Protocol-Trained Coach

Sam-J
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Re: Got stuck, any suggestions?

Postby Sam-J » Mon Nov 25, 2019 3:57 pm

Thanks for the link JML!


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