Just accepted into an AD Study

[Verax]

Reluctantexan, thank you again for your courage in volunteering for the EARLY trial. We learn from failures and the necessity often to start over again, wiser hopefully. But please don't give up on clinical trials just because of one failure. If you are eligible (and maybe you are not yet) I hope GeneMatch will suggest another one in the future.

NF52, thank you for the reference about FDG-PET scans. Please look at the other side too. I have read just a little about such biomarkers and that paper is probably correct and the reason why Medicare won't pay for such diagnostic scans but will as part of research. I believe there are other PET scans for amyloid such as PiB-PET that are being tested with an attempt at standardization to improve reliabilty. CMS issued a Medicare National Coverage Determination (NCD) on September 27, 2013 which allows conditional coverage of amyloid PET under Coverage with Evidence Development (CED) as part of the IDEAS study.
https://www.cms.gov/Medicare/Coverage/C ... d-PET.html

"Evidence development" is one of the goals for the Novartis Generation studies. AD "evidence" historically has been histological, findings of amyloid and tau tangles in the brain of dead people--not so useful for those of us currently using our brains for other purposes! There is an urgent need for development of biomarker evidence of AD before cognitive changes in order to prevent AD before amyloid and tau build up, as they are difficult to remove once there. The theory is that some drugs such as BACE1 inhibitors can prevent amyloid buildup. In order to finance such drug development, to see if such drugs work, we must start early, and have a way to track progress, but this is a Catch-22, which comes first. I referenced these points related to the Generation Studies in another thread here.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3343739/
https://doi.org/10.1016/S1474-4422(16)30055-2

[Verax]

Sorry, the editor here won't accept URLs properly, please copy the whole line and paste into your browser search bar.

[NF52]

Here's the corrected link to the Generations Reply:
What are we willing to accept for preventing Alzheimer's disease? – Investigators' reply

[reluctantexan]

Anybody: Is it possible to get different apoe readings from different tests?

[reluctantexan]

Not really sure what I'm going to say to the pastor so I guess I'll just listen to him at first. Then I'll take over. Just kidding. Our local Cleveland Clinic might be interested in helping us with handouts, maybe a speaker. However, I'd like for the interested participants to do study on their own, online and/or at the library. Then all participants would be invested in the meetings. I have extra computers if the church has wifi and will set aside a study room. Can people who are asymptomatic set up accounts here for learning purposes, or is this all too personal? I don't want to steer people here if it would be an invasion of privacy.

The Bredesen Protocol group on Facebook is unofficial and a closed group, but there are many people in the group who are caregivers or asymptomatic. I really would rather people look into the Functional Medicine approach than Clinical Trials. However, there may already be people around me at the church who would benefit from being in a clinical trial so I'm prepared to share what I know about that.

I remain every hopeful that something positive will come from this.

[NF52]

...Can people who are asymptomatic set up accounts here for learning purposes, or is this all too personal? I don't want to steer people here if it would be an invasion of privacy...I really would rather people look into the Functional Medicine approach than Clinical Trials. However, there may already be people around me at the church who would benefit from being in a clinical trial so I'm prepared to share what I know about that.

Hi relecutantexan!
You bring a new meaning to "go to church and learn something"! It's possible for anyone to come and browse this site without setting up an account with a user name, and it's certainly not an invasion of privacy, since we all choose what to share online.
If you go onto the site without logging in, you'll see exactly what any of the folks at your group would see. Some of the options, like subscribing to a forum, sending a private message, seeing some charts that people posted, aren't available, but they can search and see the information on the Welcome that might be useful to them.
As for steering people to Functional Medicine instead of Clinical Trials, I think it's important as a guide to show many options, and to acknowledge that different people have different needs. Some may want to be steered to caregiver sites, or support groups, others to using Google Scholar to search for information, other to MPI Cognition, or just to reading Dr. Bredesen's book. And others may want to check out Clinicaltrials.gov. These aren't mutually exclusive approaches. We all benefit when people learn as much as possible to help them on their own path.

Be sure to tell us how it goes!

[reluctantexan]

Thanks, NF52. You're a champ. I've copied your response (most of it) into a text doc to share with him.

[reluctantexan]

I hardly know where to start. Didn't take any of my notes with me and just let the conversation roll. The good news is the advice is to wait until Fall to start having meetings. The bad news is that it's all my baby. "I want to help you be a success."

We discussed what words might keep people from coming. Evidently there are lots of doctors and nurses in the congregation, so using the word "alternative" might push them away. The other side of that is that if I don't make it clear that we're talking a lifestyle and dietary approach the traditional medical pros will show up to tell people what to do. Guess it's a tightrope.

This particular church has two groups at the present which work: One is for cancer and the second is called Dancing with Parkinson's Disease. I want to contact the leaders of these two groups and see about attending their meetings. How better to learn what works, right?

My next step will be to develop a pattern for the AD Group Study. Don't know if I'll call it that. Don't know much for now.

Are any of the interns here who are Bredesen Protocol savvy willing to advise me? Help!

[reluctantexan]

Yesterday I took my next step in determining how to understand the needs specific to this particular group of people at the church. I attended and participated in a successful group called Dancing with Parkinson's. I had fun and got some great exercise AND had a wonderful FTF talk afterwards with the instructor. She is going to put me in personal touch with the outreach director for the Cleveland Clinic Las Vegas. This way I don't have to reinvent the wheel. I've been invited to attend all the DwP group meetings.

In doing my online research it dawned on me that PD and AD are branches on similar trees and that a Keto Diet would be as good for both groups as dance is. Revelation! Sometimes what ought to be obvious takes time to get through to me.

Thanks for listening.

[reluctantexan]

1. Haven't gotten an email from the head of outreach at the local Cleveland Clinic, but I'll give her time to get back to me. After some time, I'll contact her directly if I can find her email on the website, or fill out a form.
2. Yesterday I went and sang for an AD group at a local Senior Living facility. When I was a child, I sang in such places regularly and I found the AD people to be no different from those I visited 60 years ago. As always, most are women.