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staving off AD onset
ReidandCara
Posted: Monday, February 15, 2021 8:00 AM
Joined: 2/15/2021
Posts: 2


My husband Reid [63] was in a couple clinical trials at the Toronto Memory Program 2019-20.  He has one copy of the ApoE-4 allele, and a spinal tap revealed accumulation of amyloid and tau.  In December, the research doctor told us that Reid is likely to develop cognitive impairment due to AD in 5-12 years.  His older sister has young onset AD [symptoms showed up when she was 63; she's 67 and in moderate dementia most probably due to AD].  Both parents exhibited signs of dementia in old age [mid-70's and 80's] but were never diagnosed.

Reid has no symptoms of cognitive impairment.  He sometimes searches for nouns, like most of us in our 60's.  The research doctor recommended we go on the Acti-v8 protocol.  We have done a lot of research on building cognitive reserve and keto supplements [MCT oil, BrainXpert, Souvenaid] and other 'prevention' protocols like the FINGER study.  We are heartened by the Nun Study.

I would like to build a community of people like Reid who are at high risk of developing dementia--children and siblings of persons with Alzheimer's, or people who've been in clinical studies and know where their brain is headed.  I would like to share news about protocols that can help stave off onset or that improve cognition in people with mild cognitive impairment probably due to AD.

I think any child or sibling of a pwd should start the Acti-v8 protocol. [url below]

We are candidates for the AHEAD study of BAN2401 [postponed to May due to C19] and are also thinking about trying for the ANAVEX2-73 study.

We know well that there is as yet no cure for AD, but we hope to stave off onset.  

If you have any news to share, please let me know.  Thank you very much!

Cara

Acti-v8 Protocol

https://globalalzplatform.org/activ8yourbrain/

BrainXpert and Souvenaid are not available in North America yet.  Nestle makes BrainXpert for Europe, Australia, New Zealand, Japan.

BrainXpert

https://www.neurologylive.com/view/ketogenic-drink-significantly-improves-cognition-in-mild-cognitive-impairment

the FINGER study

http://alzheimersprevention.org/downloadables/FINGER-study-report-by-ARPF.pdf

MCT oil

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6722814/

key studies using PET and carbon-11 acetoacetate (11C-AcAc) tracer to measure cerebral ketone uptake have shown that ketone metabolism remains intact in AD [15] and augments with increasing ketone substrate availability [108,109,110]. This encouraging evidence makes a case for the latter explanation and points to the potential for dietary NKTs to serve as a therapy to target the bioenergetic crisis involved in the pathology of AD.

Souvenaid is not available in North America yet.  It seems to be different from BrainXpert.

https://news.ki.se/new-results-from-a-nutrition-based-intervention-show-broad-and-positive-effects-for-patients-in-the

great podcast

https://dementiamatters.podbean.com/

 

 

      


Lane Simonian
Posted: Monday, February 15, 2021 10:54 AM
Joined: 12/12/2011
Posts: 4998


 Thank you for coming here and for sharing this information.  We were much more active here a decade or so ago, but there are still people who come here providing and seeking information.

A few notes on the drugs.  BAN2401 may help slow down the progression of Alzheimer's disease in individuals with one or two copies of the ApoE4 gene.  

https://www.alzforum.org/news/conference-coverage/second-look-ban2401-data-still-positive-despite-snafu

For a person with one copy of the ApoE4 gene the slow down may be statistically but not clinically significant.

I beleive that Anavex 2-73 will prove to be a better drug for Alzheimer's disease.  At 148 weeks, Anavex 2-73 (blarcamesine) substantially slowed down the decline in cognition and largely stabilized activities of daily living .

https://www.anavex.com/wp-content/uploads/2019/03/ANAVEX2-73_CTAD_2018_Presentation.pdf  (pages 16 and 17).

The phase 3 clinical trials results are supposed to be out the latter part  of next year.

About 20 percent of people interested in the trial are excluded for genetic reasons (unreated to ApoE4 status).  The bigger problem though is that to the best of my knowledge there are no North American trial sites (the trials began in Australia and now are being extended to Europe).

From a broader perspective, treatments that reduce oxidative stress can extend out the age of onset in those with genes that lead to early onset and in some case prevent onset in those with  the ApoE4 gene.  Besides the studies and treatments you have mentioned, this includes aromatherapy and panax ginseng.

https://onlinelibrary.wiley.com/doi/full/10.1111/j.1479-8301.2009.00299.x (this study used a diffuser, but direct inhalation for a few seconds a couple of times a day is probably more effective).

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3659550/


ReidandCara
Posted: Friday, February 19, 2021 10:58 AM
Joined: 2/15/2021
Posts: 2


Dear Lane:

Thank you so much for your detailed and informed response.  This information will prove helpful in our discussions about which clincial trial to join, or even whether.

I wish there were a care navigator or gerontologist who could answer our questions and provide guidance.  My husband has very mild symptoms of short-term memory loss, the kind of thing all aging people experience [where did all my nouns go?  someone came and replaced them with adjectives!], so he doesn't need a full geriatric work-up, he just needs someone to say, Don't try that or Do keep on doing this.  But it seems, in the world of Alzheimer's prevention, we have to do it ourselves.

But you, Lane, gave me exactly what I'm looking for.  Thank you very much.

I did hear from a BrainXpert researcher who said that Bulletproof MCT oil could be an interesting alternative to BX and seems to be a good quality product.  Unfortunately, no news on when it will become available in North America,  

Also some news on the difference between BX and Souvenaid:  BrainXpert is principally an MCT oil supplement with the goal to increase ketones & thus increase energy availability in the brain.  Souvenaid seems to be a multi-vitamin and multi supplement-approach combining different nutriment that may be useful for brain function, structure et activity.

We just finished a conversation with a researcher at Toronto's CAMH, doing an At-Home study using transcranial dirrect current stimulation [tDCS] and building cognitive reserve [CR] for folk with MCI or depression.  It's a big commitment--2 hours a day for 8 weeks, the first week being daily meetings with a trainer, then you get to take the tDCS device home.  Weekly check-ins with the trainer.  Every six months for two years you get another week of tDCS and CR exercises.  It may be discontinued soon, so if anyone's interested, apply now.  You need to be within driving distance of Toronto, I would say.

https://clinicaltrials.gov/ct2/show/NCT02959502


Lane Simonian
Posted: Friday, February 19, 2021 3:17 PM
Joined: 12/12/2011
Posts: 4998


I likewise appreciate all the information that you are providing, Cara.   Whenever new information becomes available, please let us know.

Everyone is at different stages in this journey, but you may be able to find someone on the other forums who are dealing with subtle changes in cognition that may or may not be a sign of future memory loss.  Some I believe are trying preventive measures for themselves of for their loved ones.  



HowDoYouDeal
Posted: Friday, April 2, 2021 11:26 PM
Joined: 2/17/2019
Posts: 380


You may also want to look into PhotoNeuroModulation, aka light therapy, though it would have to be after the trans-cranial trial. 

here's a link to get you started. 

https://www.wnycstudios.org/podcasts/radiolab/articles/bringing-gamma-back

I have tonnes of opinions and am happy to share, though you can also find just about everything I've ever thought about AD by searching by my boardname.


Iris L.
Posted: Tuesday, April 13, 2021 9:01 PM
Joined: 12/15/2011
Posts: 17544


ReidandCara wrote:

I wish there were a care navigator or gerontologist who could answer our questions and provide guidance.  

My neurologist has given me great guidance.  I have a diagnosis of cognitive impairment not otherwise specified.  I am APOe 4 positive for one allele.  My Amyvid PET scan confirmed that I do not have Alzheimer's Disease at this time.  I have been on Exelon patch and Namenda XR for over 10 years to help with my memory and my speech. 

 

But it seems, in the world of Alzheimer's prevention, we have to do it ourselves.

Yes, you are right, most of us have to cobble together our own treatment or prevention of further progression program.  My neurologist gave me medications, but I learned about Best Practices, oxidative stress, avoiding stress, treating sleep apnea and other aspects here on these message boards.  The members here know quite a lot.  But you have to search and sift through a lot.  It's worth it.  I would not be living independently without these people.  


I hope you are still looking over the boards.  Please look into PositScience brain training.  I did this for one year at an adult school on advice from my neurologist and it really helped me.  Best wishes to you and Reid.  


Iris L.