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What's working for me
Posted: Tuesday, August 5, 2014 9:49 PM
Joined: 8/5/2014
Posts: 6

Long and short of it; I've been diagnosed since at least 2006.  I was in my 40's.  I'm 52 now.  During that time I have lead support groups, blogged personally, blogged nationally, attended symposiums, participated in clinical research and enjoyed friendship and support of a great group (DASNI.)  However, the group began to fall apart several years ago and the local Alz. Association puts the Ass in association so I am disenfranchised curmudgeon in the AA circles, but in reality, I'm the queen of positive.  I have experienced a much slower decline than anticipated and even my gerontologist admits my protocol is a big reason.  It isn't easy and it isn't for everyone.  I have no other complicating health issues usually associated with dementing illnesses.  YMMV

What works for me, or "My Alzheimer's protocol"

Lamictal (neuroprotective!)
chronic caffeine consumption
medicinal marijuana
intermittent fasting

My real beef is that there is peer reviewed research on all of these and you probably only know about the first one (namenda.)  I am considering being a team captain of a Walk to End Alz group and putting a QRC on our team shirts with links to these and other journal articles.  If the Alz. Assoc. is so gun-ho for research, why aren't they screaming from the roof tops about the research on this?

rant over.  Read the links.  Decide for yourself.  NO, it's not magic, not it doesn't "cure" alzheimers, it's a mix that has delayed my decline and helped me adapt to the changes, but aside from a neuro who wouldn't take me off lamictal for my seizures (a result of Aricept) who then told me it was neuroprotective, I have literally stumbled on these other pieces of information.  I want everyone to know and benefit. And if you remember me from the old days, good on ya.  A link to my former national blog, but I couldn't keep up so I stopped.

Posted: Tuesday, August 5, 2014 11:02 PM
Joined: 12/6/2011
Posts: 3326

Welcome back, leftoutknitter. I was diagnosed 5 years ago and still remain in the early stage, I believe because of best practices: eating a Mediterranean diet, strenuous exercise, staying socially active, and taking meds as directed. I also believe that aroma therapy has been a strong factor in keeping me in the early stage.   


Have you had an opportunity to review the material Lane posted on the Clinical Trial board about aroma therapy?  

Posted: Wednesday, August 6, 2014 7:07 AM
Joined: 5/20/2014
Posts: 4405

Never heard of Lamictal's neuroprotective potential or of it being used for treating dementia. I know in addition to being prescribed for seizures it is also used as a mood stabilizer like many of the neuroleptics. I wonder if there is hesitation in prescribing Lamictal due to the rash which as you already know is rare? I'm sure there are many areas of needed research that are being overlooked especially, first hand accounts of what works and what doesn't work which is nothing new in the field of medicine. Have you come across others like yourself following the same regimen who are having similar success? Thank you for sharing this information!
Posted: Wednesday, August 6, 2014 9:18 AM
Joined: 9/12/2013
Posts: 3560

So glad I read this today.


Medical Marijuana/Cannabis has a ton of research info out there and I am fortunate to have fresh plants available to me. I believe it has helped me stay functional longer than what might have been - but who knows?


Some people get diagnosed and are gone in 2 years! I suspect I have had cognitive decline for over 10 years, maybe 15? I was a classic marijuana smoker for 45 years i.e. after a hard days work, come home, sit outside with dogs, smoke a little bit, make dinner, relax. Start next day fresh.

It wasn't until I moved to a legal state that I realized cannabis had been my medicine all those years. The only thing that got me through chronic migraines, used for food poisoning episode, used for trauma, for insomnia.


I use fresh leaves now but think MM allowed me to work another 10 years and is helping me now.


I am glad you got to write your blog and hope to read more of your posts.

Iris L.
Posted: Wednesday, August 6, 2014 12:47 PM
Joined: 12/15/2011
Posts: 16600

Welcome, Diane.    Were you on these boards before?  I'm sorry I missed your blog.  I would have liked to read it. 


What is YMMV?


Iris L. 

Posted: Friday, August 8, 2014 9:59 PM
Joined: 8/5/2014
Posts: 6

YMMV is "Your mileage may vary."

Yes, I was on the boards before the boards were this organized and I am stunned to see the well done page elsewhere on the site about Young onset.  Believe me, that wasn't there and we lobbied, begged, pleaded to be included.  Just don't have it in me to be the leader of the pack anymore.

First person information was mentioned by someone, no, mine isn't first person, it's peer-reviewed research, which is the only reason I share it.  I grew quite tired of the "cures" that people threw at me; coconut oil, beets, turmeric, a specific diet.

I note that "best practices" is a new buzz word.  Sounds like when my doctor told me to lose weight and stay active.  Losing weight really was key, but I don't know why except the research about lab markers changing after fasting.

Hope that answers your questions.  Glad you're here for each other and keeping up.
Iris L.
Posted: Saturday, August 9, 2014 1:38 AM
Joined: 12/15/2011
Posts: 16600

leftoutknitter wrote:
 Losing weight really was key, but I don't know why except the research about lab markers changing after fasting.


I have a new question.  Are you saying that losing weight helped your cognition?

We're here for each other, Diane.  As you already know, there's little support in the outside world for people like us.  The members here have helped me so much!

Iris L

Posted: Saturday, August 9, 2014 8:44 AM
Joined: 11/25/2013
Posts: 29

leftoutknitter, can I ask you to elaborate a bit more on your protocol please? 


How do you practice fasting?  Do you limit calories on certain days of the week, limit eating to specific hours daily, or...?


How much caffeine do you consume?


What form of medicinal marijuana?  Smoke, oil, edibles? Is there a particular strain you prefer?


Thank you!