Page 1 of 2

Success with ReCODE

Posted: Sun May 03, 2020 10:31 am
by Emmanuel Brun
Who has had great success with Bredesen's ReCODE protocol? Who hasn't?

What is your story in that regard?

Re: Success with ReCODE

Posted: Sun May 03, 2020 11:53 am
by floramaria
Emmanuel Brun wrote:Who has had great success with Bredesen's ReCODE protocol? Who hasn't?

What is your story in that regard?
Hello, Emmanuel Brun, and welcome to the site.
Before I give you my perspective on successes with Dr Bredesen’s ReCODE protocol, I am curious to know what brings you here.
Are you considering the ReCODE Protocol for yourself? For a loved one? Are you a student doing research? Or a journalist? If you are so inclined, a good place to introduce yourself is in Our Stories. Or you could reply in this thread. (Or not; it is not required. I am just interested.)

Ability to comply with the protocol seems to me to correlate with better results. And earlier intervention, which, in itself, also probably correlates with compliance. In my limited experience, it seems to me that individuals whose cognition is still sufficiently intact that they actively engage with and embrace the protocol do better than those who have a spouse, child, or friend enroll them in a program they do not understand. It can be difficult for a support person/ loved one to really follow the protocol with someone who is resistant to the required changes. That said, Dr Bredesen has reported improvement even in people with severe impairment. And some of my fellow coaches have worked with clients who had advanced AD and showed significant improvement.

You might also use the link to Our Stories to read about some of the successes. Or maybe turn up some previous posts with the search function which you access with the magnifying glass to the left of your user name.

Re: Success with ReCODE

Posted: Sun May 03, 2020 12:09 pm
by MicheleCC
Emmanuel Brun wrote:Who has had great success with Bredesen's ReCODE protocol? Who hasn't?
What is your story in that regard?
Hi Emmanuel! I don't have any experience with the ReCODE protocol myself, but there are many here who have. Here are results from a search I did.

Since this is your first posting on apoe4.info, I'd like to welcome you to this very informative and supportive community! A place many people like to start is simply to understand what apoe4 is and how to work with it. Our Primer is an excellent resource.

To learn how to do searches, subscribe to forum threads or to share your story, here is a link about "How-to" get the most from this website. Please let me know if you need help finding anything.
Warm regards,
MicheleCC

Re: Success with ReCODE

Posted: Sun May 03, 2020 1:06 pm
by Emmanuel Brun
That you for your reply.

Someone very close to me has been diagnosed with Alzheimer and little cognitive decline. I can barely notice it. I want to do everything possible to stop the progression of the illness. We are waiting to be able to do the blood tests. I don't think it is ApoE4, but I don't know for sure. That's also why I didn't want to be too specific at this time. Unless I know for sure it is ApoE4, this forum isn't the place where I want to ask for more specific advice.

I read Bredesen's book, watched many of his speeches and interviews. I was quite impressed. Everything he says seems to make so much sens. However, I also realize there is a big money making machine, many certified practitioners who pay huge fees in order to be certified and then charge a lot of money for their advice. I couldn't find much against ReCODE, but there are people who question it. I couldn't find many testimonies of people who have been very successful with it, either. Therefore I'm still a little bit skeptical. I would like to read testimonies (which aren't the ones in Bredesen's book). So far I could barely find any.

This being said, I don't see any reason not to try to optimize one's metabolic values. While we are waiting to find a physician willing to do a prescription for the tests (many don't want to do it because they have quotas), this person has begun to change their lifestyle according to Bredesen's recommendations and seems to notice some improvements. This person has read the French version of Ending Alzheimer and is willing to fight to disease.

Re: Success with ReCODE

Posted: Sun May 03, 2020 1:10 pm
by Emmanuel Brun
MicheleCC wrote:
Emmanuel Brun wrote:Who has had great success with Bredesen's ReCODE protocol? Who hasn't?
What is your story in that regard?
Hi Emmanuel! I don't have any experience with the ReCODE protocol myself, but there are many here who have. Here are results from a search I did.

Since this is your first posting on apoe4.info, I'd like to welcome you to this very informative and supportive community! A place many people like to start is simply to understand what apoe4 is and how to work with it. Our Primer is an excellent resource.

To learn how to do searches, subscribe to forum threads or to share your story, here is a link about "How-to" get the most from this website. Please let me know if you need help finding anything.
Warm regards,
MicheleCC
Thank you for your reply and the information you provided. I just registered here. Therefore I still have to find my way around.

Re: Success with ReCODE

Posted: Sun May 03, 2020 2:44 pm
by Tincup
Emmanuel Brun wrote:Therefore I'm still a little bit skeptical. I would like to read testimonies (which aren't the ones in Bredesen's book). So far I could barely find any.
You might try this Bredesen FB group.

Here is one post from that group, "I was diagnosed with Early Onset Alzheimer’s in 2012. I met dr Bredesen in 2015 and have been following the protocol ever since. My recently published book describes my experience, including one three month relapse. Hopefully you can learn how to avoid one. It is available on Amazon and thanks to Dr B’s endorsement has sold in nine countries" This is a link to the book.

I'm in that group though don't read it all the time. There is a mix of folks that have done very well and others with no response. I'm guessing it may have to do with the kind of dementia they have. As I recall the Type 3 or "toxic" is the most difficult to treat and resolve.

Re: Success with ReCODE

Posted: Sun May 03, 2020 3:18 pm
by Emmanuel Brun
Tincup wrote:
Emmanuel Brun wrote:Therefore I'm still a little bit skeptical. I would like to read testimonies (which aren't the ones in Bredesen's book). So far I could barely find any.
You might try this Bredesen FB group.

Here is one post from that group, "I was diagnosed with Early Onset Alzheimer’s in 2012. I met dr Bredesen in 2015 and have been following the protocol ever since. My recently published book describes my experience, including one three month relapse. Hopefully you can learn how to avoid one. It is available on Amazon and thanks to Dr B’s endorsement has sold in nine countries" This is a link to the book.

I'm in that group though don't read it all the time. There is a mix of folks that have done very well and others with no response. I'm guessing it may have to do with the kind of dementia they have. As I recall the Type 3 or "toxic" is the most difficult to treat and resolve.
Thank you.

Re: Success with ReCODE

Posted: Sun May 03, 2020 3:21 pm
by MicheleCC
Emmanuel Brun wrote:Who has had great success with Bredesen's ReCODE protocol? Who hasn't?
What is your story in that regard?
This might give you a bit of what you’re looking for... https://alzsurvivor.com/

Re: Success with ReCODE

Posted: Sun May 03, 2020 6:15 pm
by NF52
Emmanuel Brun wrote:...Someone very close to me has been diagnosed with Alzheimer and little cognitive decline. I can barely notice it. I want to do everything possible to stop the progression of the illness. We are waiting to be able to do the blood tests. I don't think it is ApoE4, but I don't know for sure....
This person has read the French version of Ending Alzheimer and is willing to fight to disease.
Welcome, Emmanuel,

I admire your determination to support in any way possible the individual close to you with a recent diagnosis of Alzheimer's disease. Given that you see little cognitive decline, it seems likely that the areas of early impairment are those often seen in the earliest stages of Alzheimer's disease: difficulty with "executive functioning" due to changes in the frontal lobe. This impacts skills such as planning, organizing, decision-making, judgement, time-management, and ability to evaluate one's own performance. Often these are changes that the individual is aware of before those around her/him notices them. Another early area can be "episodic memory" for recent events, "spatial memory" for familiar routes or learning new routes, and "delayed verbal memory" (repeating a sentence or most of a list of items 5 minutes later). For lots of us, whose memories can be supported by our devices, calendars and familiar routines, these subtle changes can be so gradual as to be unnoticed until we struggle with something that triggers alarm bells.

The good news in an early diagnosis is that, if we view Alzheimer's disease as a disease with many likely causes and a long, uncertain path, we may have many routes to slowing, pausing or changing the trajectory and we will certainly have time to make important decisions about what we want to do to make our lives both easier and more meaningful. My father died of cardiac arrest at age 67, with little warning that his ApoE 4 gene (unknown) was a risk, and no time to plan how to use the time given to him. My age is 68 and I plan to use whatever my lifespan (and healthspan) is to focus on family, community, causes important to me, and enjoyment of learning.

Finally, here are some questions whose answers may guide your next steps:

1. What tests were used in making the diagnosis? Sometimes a brief screening test, such as the Montreal Test of Cognitive Assessment (MOCA) or Mini-Mental Status Exam (MMSE) is used to make a diagnosis based on a single cut-off score. Many immediate factors (fatigue, text anxiety, unfamiliarity with testing formats, sleep apnea, cultural or language barriers) can make a score on one day different than on another day. Other factors (vitamin deficiency, insulin resistance, thyroid disease, heart disease, diabetes, high blood pressure, untreated anxiety or other mental health issues) could all be contributing to a low score.

Memory clinics or neuropsychologists typically conduct 2-3 hours of tests of multiple cognitive abilities (language, memory, visual-spatial skill and processing speed), conduct a "soft-sign" test of cranial nerves and motor skills, and use questionnaires of the individual and family member about subjective changes in memory or objective changes in memory, language, behavior or . The more tests that support a change from prior functioning, the more valid and reliable the diagnosis is likely to be.

2. What blood or urine tests, if any, were taken to rule out infections, problems with lipids, glucose, blood chemistry, Vitamin B-12, etc? If none, can the doctor do those now?

3. Are there known conditions such as coronary artery disease, vascular disease, diabetes, untreated anxiety or depression, high blood pressure or sleep apnea which could make a significant difference in progression if treated aggressively?

4. Often an MRI is not needed for a diagnosis of Alzheimer's, but if an MRI was done, did a neurologist offer an interpretation of the results?

5. Did the provider recommend considering important life goals and planning for longer-term financial, legal and medical needs? What can be done to make this individual's daily life easier?
Having a car with GPS, having notification texts from a calendar app, having financial or other roles assumed by a family member or trusted friend, enjoying take-out instead of cooking, etc. may all be great "scaffolded supports" that allow for living independently.

I have met, and heard from and of people with a new MCI or mild Alzheimer's diagnosis in the last few years. Their choices for the immediate future ranged from a long-awaited family trip to the parent's native country, to joining an advocacy group, volunteering for clinical trials (drug-based and non-drug-based), moving into an independent apartment in a community with an option in the future for memory care, using a therapist and health coach to assist with family reactions and personal decisions.

The choices come with no guarantees. Those of us who live with the risk of a diagnosis (I am 68 and have two copies of ApoE4 and a "rich" family history) or with an actual diagnosis must first be able to mourn our former vision for ourselves, and then be allowed to embrace with fierce determination what is right for us at this moment. I wish you both choices that make you feel empowered and purposeful--and joy in pursuing goals make life worth living.

Re: Success with ReCODE

Posted: Tue May 05, 2020 1:16 pm
by slacker
Emmanuel Brun wrote: Unless I know for sure it is ApoE4, this forum isn't the place where I want to ask for more specific advice.
Hi Emmanuel;
Our forum is not limited to those with ApoE4; it is useful and available for anyone wanting to learn more about options for Alzheimer's. The information we discuss can be used by those without ApoE4 or unknown ApoE status. Of course, ApoE4s are at higher risk for AD and coronary artery disease.