My introduction (I'm new here), and a question

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
evapearl57
Contributor
Contributor
Posts: 3
Joined: Wed Dec 04, 2019 7:07 am

My introduction (I'm new here), and a question

Postby evapearl57 » Fri Dec 20, 2019 1:36 pm

Hello all,

I'm new to this forum, which I learned about through Dr. Bredesen's book. I am grateful for this amazing resource!
My 87-year-old father is in the early stages of Alheimer's, and is starting on the ReCode protocol. He has had the testing, gotten the report, and in January will schedule his first appointment with a doctor trained in the protocol. His ReCode report shows he has one copy of the APOE4 allele, which I was rather expecting (his mother also had AD). I sent off my DNA sample to Ancestry.com labs a couple weeks ago, so am waiting to find out if I inherited the gene as well. Either way, I was blown away by Bredesen's book, and am doing as much of the protocol as I can for now -- the diet, sleep, exercise parts, and as many of the general supplements as I can afford -- with the plan to eventually get the testing done to see what my particular risk factors are.

As I help my recently widowed father, who still lives (at his fervent insistence) at home by himself (with frequent visits from myself and my siblings to help him, bringing him cooked meals, managing his banking, bill paying, and all financial affairs, and taking him where he needs to go) I am the only one who doesn't believe that I am mistaken in trusting the validity of Bredesen's research and the ReCode program; no amount of articles, patient testimonials, etc., that I have asked them to read or look at makes a dent in their skepticism. They point to all the various mainstream medical establishment spokesmen who claim there is "not enough evidence" because there has not yet been a large scale clinical trial. I stand by my belief that all the documented improvements and reversals are real, and that trying it is worth the effort and expense -- but am hoping that the kind of clinical trial (that all the nay-sayers claim is the ONLY valid form of evidence) is is the works.

My question:- can anybody tell me what is the current status of the efforts toward getting such a trial done? Is one underway now? Is there an estimated date of completion?

User avatar
Melanie R.
Contributor
Contributor
Posts: 54
Joined: Mon Jul 01, 2019 10:41 pm
Location: Vancouver, BC, Canada

Re: My introduction (I'm new here), and a question

Postby Melanie R. » Fri Dec 20, 2019 3:07 pm

evapearl57 wrote:Hello all,

My question:- can anybody tell me what is the current status of the efforts toward getting such a trial done? Is one underway now? Is there an estimated date of completion?


Hello evapearl57,

Welcome to the forum! We appreciate your introduction and are grateful you are here.

I hope you are able to find valuable information throughout the site. Although you seem quite well informed, if you haven't already had a chance, the Primer is an introduction to APOE4, biochemistry and possible prevention strategies written by Dr. Stavia a member, in layman's terms.

The Wiki is another great resource for additional information that you may be seeking including a "how to" get the most out of the site.

I would agree with you, as would many others on this forum, that you are not mistaken in trusting the validity of Dr. Bredesen's research and the ReCode program. I also believe it is worth it and there are patient testimonials that would support this. As far as a current clinical trial in the works goes, I've quoted your question as there may be others that want to join in on this conversation.

Once again, welcome to the forum!

With warm regards,
Melanie
Functional Medicine Certified Health Coach
Reversing Cognitive Decline for Coaches (ReCODE)

User avatar
Julie G
Mod
Mod
Posts: 8524
Joined: Sat Oct 26, 2013 6:36 pm

Re: My introduction (I'm new here), and a question

Postby Julie G » Sat Dec 21, 2019 7:53 am

My question:- can anybody tell me what is the current status of the efforts toward getting such a trial done? Is one underway now? Is there an estimated date of completion?

Welcome evapearl57! Yes, there is a clinical trial underway now. I'm uncertain about the completion date but will check and get back to you.

As you know, much of your father's success will hinge both on his willingness to engage and your sibling's willingness to comply. Tell us more about how your father feels about making all of these changes. If he's onboard, I'm hopeful that your siblings won't overtly sabotage your joint efforts. You are a very caring daughter to try to implement the protocol despite the lack of support that you're experiencing. You might suggest that your siblings take a look at the research that underlies Dr. Bredesen's suggestions in an effort to help convince them. You could also remind them that Alzheimer's pathology takes at least a decade to develop and now is a perfect time for each of them to begin optimizing their own health.

NF52
Support Team
Support Team
Posts: 1289
Joined: Tue Oct 25, 2016 9:41 am
Location: Eastern U.S.

Re: My introduction (I'm new here), and a question

Postby NF52 » Sat Dec 21, 2019 8:50 am

evapearl57 wrote:...My 87-year-old father is in the early stages of Alheimer's, and is starting on the ReCode protocol...I stand by my belief that all the documented improvements and reversals are real, and that trying it is worth the effort and expense -- but am hoping that the kind of clinical trial (that all the nay-sayers claim is the ONLY valid form of evidence) is is the works.
A warm welcome on the first day of a new season of the year, Evapearl57,

I will try to answer your question about clinical trials--as soon as I recognize how much you and your family have already done.

It sounds like your family has strongly come together to support your father through some sad days recently with the loss of your mother and his diagnosis of early-stage Alzheimer's. The practical support in taking over some tasks and the regular social support that you are giving your dad shows that you all recognize his "fervent insistence" as a deeply held value as he ages.

As a 67-year old who has experienced those events with my husband's family and my own, I hope on this first holiday without your mother that you and your siblings reminisce with your father about what he and your mother shared together and gave to you and your siblings. Looking back together can help in looking forward together, even if you have very different perspectives.

One of the ways to find common ground with your siblings is to have a conversation together with him about his values and preferences, and to make a commitment to share the same important information about his care. The Centers for Disease Control and Prevention (CDC) has a wonderful section on Alzheimer's and Healthy Aging which includes this helpful form for overall caregiving information: Complete Care Plan Form

I love that it starts with this suggestion:
In a few sentences, tell people what you want them to know about you. What is your family like? Where did you grow up? What kind of activities do you like doing (walking, sitting by the garden, playing cards, watching a TV show)? What things are you interested in learning about?
It also suggests documents that can be important to have for future planning, such as a Durable Power of Attorney, a Health Care proxy (which can still allow for you to implement Dr. Bredesen's recommendations, even if someone else holds decision-making for hospitalizations, for example), and an Advance Directive.

The question about clinical trials is a great one to talk about as a family, and requires a bit of shared understanding of what is a clinical trial. The National Institute of Health's Clinical Trials website's What is a Clinical Trial? might be a great way to start, with everyone having a copy to read before a conversation on how each feels. (The website also has a handy tool to find clinical trials.)
In a clinical trial, participants receive specific interventions according to the research plan or protocol created by the investigators...Every clinical study is led by a principal investigator, who is often a medical doctor. Clinical studies also have a research team that may include doctors, nurses, social workers, and other health care professionals.

Clinical studies can be sponsored, or funded, by pharmaceutical companies, academic medical centers, voluntary groups, and other organizations, in addition to Federal agencies such as the National Institutes of Health, the U.S. Department of Defense, and the U.S. Department of Veterans Affairs. Doctors, other health care providers, and other individuals can also sponsor clinical research.

Dr. Bredesen has conducted "clinical studies" of his protocol on participants who agreed to take recommended supplements and follow recommendations for diet, exercise, sleep, etc. He has written about those, both in his book and in a more recent article in an open-access journal: Reversal of Cognitive Decline: 100 Patients. Here's an excerpt from the "Discussion" section of that article, in which researchers typically summarize the benefits and limitations of a study and future directions:
In the current set of 100 patients, for those evaluated by MoCA, MMSE, or SLUMS pre- and post-treatment (72 of the 100), there was a mean improvement of 4.9 points, with a standard deviation of 2.6 and a range of 1-12. Since the natural history is one of decline, the improvements that were documented must be considered as additional to the prevention of decline that would otherwise have occurred. Of course these numbers must be tempered with any failures that occur, so that it will be important to revise these in the context of a randomized, controlled clinical trial...
As more patients are treated with this approach, patterns of improvement vs. lack of improvement, timing, which domains typically improve and which do not, and related insights are likely to emerge. Although this was not a focus of the cases reported here, certain observations were made repeatedly. One of these was that the significant others of the patients typically reported that the patients were “more engaged” and more responsive with treatment. Facial recognition, navigation, and memory were often improved, whereas calculation and aphasia were less often improved.

It's okay for you to acknowledge their concrn and add your own belief: "I know you would like evidence from a large clinical trial before starting this with our dad. Yet I believe that there is enough preliminary evidence that this protocol may have positive effects, and is unlikely to hurt our father." That shows you respect their concerns and are open to monitoring how he does on the protocol. Your siblings may be more supportive if you focus on certain aspects: the benefit of social engagement and exercise, good sleep, lowering added sugar, optimization of Vitamin B-12 to a level of 500 ng/mL, substituting healthy fats for unhealthy fats. (You can find links to studies of each of these using our Wiki

The protocol doesn't require them or you to sacrifice deeply held beliefs. It merely suggests trying to nudge certain areas in ways that will support his continued fervent goal of independence. If that is the shared goal, it may be easier to acknowledge that many efforts are likely to help him achieve it. Best wishes for a holiday that includes time for celebrating what a great family you have!
4/4 and still an optimist!

evapearl57
Contributor
Contributor
Posts: 3
Joined: Wed Dec 04, 2019 7:07 am

Re: My introduction (I'm new here), and a question

Postby evapearl57 » Wed Jan 01, 2020 1:05 pm

Thank you Melanie, Julie, and NF52 for the warm welcome, the helpful suggestions, and the words of encouragement.

evapearl57
Contributor
Contributor
Posts: 3
Joined: Wed Dec 04, 2019 7:07 am

Re: My introduction (I'm new here), and a question

Postby evapearl57 » Wed Jan 01, 2020 1:55 pm

Julie G wrote:
My question:- can anybody tell me what is the current status of the efforts toward getting such a trial done? Is one underway now? Is there an estimated date of completion?



"As you know, much of your father's success will hinge both on his willingness to engage and your sibling's willingness to comply. Tell us more about how your father feels about making all of these changes. If he's onboard, I'm hopeful that your siblings won't overtly sabotage your joint efforts."

My father is very willing to follow the protocol to the best of his ability. One challenge will lie in convincing my siblings to get fully onboard with the dietary changes (starting with learning what they are, and not offering him sugary things when they visit), especially since I live a day's drive away and am not the one who can oversee his diet or do his grocery shopping, except when I visit during my breaks (I am a teacher, so I am able to spend a week or two at a time with him then).

I will spend all of this next summer with him and am hopeful that two months of helping him follow the protocol to the letter will be enough to both notice some improvement in how he feels, and for him to get accustomed to the changes and make them part of his routine. Once he gets in to see the ReCode-trained doctor, within the next couple weeks, and gets the diet advice directly from her (instead of just from me), I'm hopeful my whole family will be more convinced of their importance.

In the meantime, one of the main hurdles to his following the protocol is in him being able to remember it. I video-call him every night on his "ViewClix" (a wonderful tool, btw, for families who want be able to video-call loved ones who are "technology challenged" for whatever reason), and try to help him remember things (like not to snack after dinner in order to do the 12+ hour fasting window) during our nightly conversations. I am trying to take the changes a step or two at a time, so am focusing first on helping him remove sugar from his diet. He's all for doing it, but then forgets. Of course I am anxious to help him do as much as possible with it ASAP, since I know that time is NOT on his side

I'm with him now for the holidays, and stocking his freezer and pantry with gluten-free bread, low-carb sugar-free desserts made with almond flour and sweetened with monk fruit/erythritol sweetener, etc., to reach for whenever he wants a sweet treat, and getting as many vegetables as possible in his diet. There are lots of challenges in our situation, but I am still holding out hope that we might at least be able to halt the progression of the disease.

Thanks again for your welcome and your words of encouragement. I appreciate any updates and/or details regarding the current clinical trial.

User avatar
Julie G
Mod
Mod
Posts: 8524
Joined: Sat Oct 26, 2013 6:36 pm

Re: My introduction (I'm new here), and a question

Postby Julie G » Thu Jan 02, 2020 2:30 pm

My question:- can anybody tell me what is the current status of the efforts toward getting such a trial done? Is one underway now? Is there an estimated date of completion?

Eva, you can read more about the trial here. It will run for one year. Full results are projected to be complete by November 2020.


Return to “Our Stories”

Who is online

Users browsing this forum: No registered users and 5 guests

 

 

cron