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What Would It Take Prove A Cure For Alz?
The_Sun_Still_Rises
Posted: Saturday, February 18, 2017 8:40 AM
Joined: 7/24/2015
Posts: 3020


This is a question that I posed in the CG Section...per some ongoing discussions there...but I am curious what you thoughts are.  I know what it would take for ME, but I am not as able know what others need in terms of proof...so please be specific.

What tests or labs would you need see reversed? 

What results would you need see in someone? 

Thanks in advance for you thought out answers.

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Mimi S.
Posted: Saturday, February 18, 2017 10:20 AM
Joined: 11/29/2011
Posts: 7029


I would like to see a clinical trial involving various dosages of the drug Mestinon, used for Myasthenia Gravis. Two neurologists have GIVEN REASONS WHY IT MIGHT BE EFFECTIVE.
The_Sun_Still_Rises
Posted: Saturday, February 18, 2017 10:43 AM
Joined: 7/24/2015
Posts: 3020


Interesting...I would be VERY curious in that and what they say.  I am on Mestinon...however, it a bromide (it the ONLY form it come in) and that speed the dementia. 

Mestinon a choline-enzyme-inhibitor....in the same way, Aricept (and their ilk) are acetyl-choline-enzyme-inhibitor.  Neither affect the disease process....but metaphorically are like an O2 tank for bad lungs.  They just give MORE neurotransmitter work with. 

When I got my new doctor...myasthenia gravis was her first dx of me...and Mestinon...and although it gave me my life back in sooo many ways, it did NOT affect my brain.  Until then...I had harbored the belief that if they just fixed my body that it would fix my brain - I had real believed that the 2 were connected.  And they may be....I still often think my dementia is auto-immune generated. 

BUT...that would mean...my immune system is attacking the receptors in my brain, in the same way it attacking the receptors in my muscles.  Which means the more active I am...the more my immune system rages against my body. 

But even if they did that clinical trial....how would they SHOW conclusively that it helped???  What would be the test that shows that??? 

Thanks.

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gardennut
Posted: Saturday, February 18, 2017 11:04 AM
Joined: 12/20/2016
Posts: 12


I would like to see clinical trials for those us younger set .I would like also to clinical trials for those us that are diagnosed with MCI


The_Sun_Still_Rises
Posted: Saturday, February 18, 2017 11:53 AM
Joined: 7/24/2015
Posts: 3020


I would like see that as well. 

However, BEFORE something get for clinical trials....we need KNOW that that something have a hope of working.....so the question I am asking is specifically *what* lab results would you need see tracked in order KNOW something had worked? 

My doctor in the process of ordering some labs for me...as I am trialing some things, see if they pan out in something that may be useful conduct a clinical trial on....but I would still need know the specific labs we should be getting NOW at the outset....in order PROVE that they had changed.

So any ideas, anyone??? 

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Unforgiven
Posted: Saturday, February 18, 2017 2:43 PM
Joined: 1/28/2013
Posts: 2661


I would like to see clinical, double-blind testing of just about everything holistic that has been proposed here, including cannabis and other hemp derivatives.  I already know that a low fat high sugar diet is worse than useless.  The real proof for me would be a higher score on the MOCA, although I am distressed to see the subjective bias of the test administrators affecting the scores.  It differs a LOT if the NP giving the test is a long time friend who wants the PWD to do well.  If an objective cognitive test exist, I'd like to see improved results on that one.

Other than that, improved quality of life in general.


The_Sun_Still_Rises
Posted: Saturday, February 18, 2017 6:38 PM
Joined: 7/24/2015
Posts: 3020


Yes...me also...but sometimes there a ways go before that. 

Thanks, Unforgiven....you the only one who said Cog Testing....and I not sure why I did not think of that, but thank you, thank you. 

I looked up the MOCA....and it MAY be available do and score online (???) so computer scored.  If so...GREAT.  Otherwise, would you accept if I simply returned my neuropsych lady every 6 months or year, depending on how often she would consent do it...and will you accept those test results against my previous ones????   Because "I" think this would be a GOOD barometer of tell whether any real improvement had happened cognitively or whether it all subjective. 

Again, thank you, thank you for you honest attempt at this....it is admittedly a really hard question answer. 

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Unforgiven
Posted: Saturday, February 18, 2017 7:53 PM
Joined: 1/28/2013
Posts: 2661


Well, I'd also like to see a brain image for my mother that showed regeneration in  the areas that are presently filled with spinal fluid.  But I know that is not realistic.  Regeneration of nerve cells or brain cells is the Holy Grail --it would help so many people.  I have a niece who suffered partial paralysis after spinal cord compression secondary to dwarfism.  She deals with it just fine, but it's not easy being Little and have mobility issues on top of that.

The idea is to have some kind of objective test to use as a benchmark.  And then a double-blind study to see if the results can be reproduced in others.

Cuz, a life without donuts and it turns out not to help in any way, why, that would be a double tragedy  ;p


The_Sun_Still_Rises
Posted: Saturday, February 18, 2017 9:20 PM
Joined: 7/24/2015
Posts: 3020


Unforgiven wrote:

Well, I'd also like to see a brain image for my mother that showed regeneration in  the areas that are presently filled with spinal fluid.  But I know that is not realistic.  Regeneration of nerve cells or brain cells is the Holy Grail --it would help so many people.  I have a niece who suffered partial paralysis after spinal cord compression secondary to dwarfism.  She deals with it just fine, but it's not easy being Little and have mobility issues on top of that.

The idea is to have some kind of objective test to use as a benchmark.  And then a double-blind study to see if the results can be reproduced in others.

Cuz, a life without donuts and it turns out not to help in any way, why, that would be a double tragedy  ;p

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LOL, I agree with that....a double tragedy, indeed.  I actually don't eat doughnuts (or haven't in a long time)...but f'ing nutella sandwiches are G-d's gift the world!!!  I am current going through withdrawl and cravings, can you tell?!  

Yes, I have wondered about the regeneration or growth of brain (I am not sure it have been done in anyone, ever).  When I was little, they thought when brain damaged in one part that that part gone forever....now they know about neuro-plasticity.  I wonder in particular, Christine Bryden who infamously show her brain scans as part her presentations. 

That said, there IS that guy in recent news who had Normal Pressure Encephalopy (ugg, sp?) and lost 90% of his brain.   Usually, NPE mimic dementia...but is relievable by drain fluid.  However, he was functioning nearly perfectly NORMAL with only 10% his brain. 

Which, for me...adds another twist on things in terms of how would ANYONE prove it (not just me)??

I think I am coming the conclusion that there is no way prove it (not that I can tell), not conclusively anyways (so the nay sayers will always nay say)....so whatever the researchers say, no one will know IF true...not really....because there no conclusive evidence.  And, like Lane point out...they always have a lame excuse why their drug did not work. 

While I agree with the methodology you propose...however, with what I am proposing, there would be no way double blind it...because lifestyle change is life style change - they can't have all people run, and only half the people gain benefits from it.  Or, as the double blind....you could compare and contrast it with all the people dying of Alz right now.   I am not suggesting anyone take anything.  I am simply suggesting find ALL the things wrong you body and systematically fix them....and, it would be different everyone, so there would be no way (likely anyways) trial it....because everybody's what's wrong with them is different. 

I am 100% sure the Bredesen got some things WRONG...because, for example, he recommend Vit D, and I know better than that (the science of Vit D)....BUT....his premise is sooo sound scientifically....it have worked in a NUMBER of other conditions.  It have cured 100% of the time Diabetes2...and that was just by diet alone. 

In any event, my first day this (4 or 5 days ago now) I gave up my glorious lovely, oh so soothing, chocolate coffee and nutella sandwiches....but the clarity I have earned, and the reduction pain...have made it worth it.  One of these days I will try again plain coffee...bleck.

Lane had recommended some tests in a different thread, but I keep trying read back find and cannot find....so I hope he will pop over here and add what they were. 

Pretty much everyone have said though in the other threads, if they see the results their loved one...that enough them. 

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Lane Simonian
Posted: Saturday, February 18, 2017 10:21 PM
Joined: 12/12/2011
Posts: 4836


Two of the most commonly used tests for cognition in Alzheimer's disease are the Mini Mental State Exam (MMSE) and ADAS-cog (Alzheimer's Disease Assessment Scale-cognition)--the latter is considered to be more accurate.  Here is a description of what ADAS-cog covers.

https://www.verywell.com/alzheimers-disease-assessment-scale-98625


The_Sun_Still_Rises
Posted: Sunday, February 19, 2017 5:52 AM
Joined: 7/24/2015
Posts: 3020


Yes, thanks.  I thought in the Spouse Section you had posted 2 actual lab tests....but every time I try scan through thread find it, respond it....I can't seem find it.   

And, I suppose, for purposes of a book...the clock drawing test would be readily print publishable.  And doable easily along the way as I go. 

It just soooo shocking for me that for all the people arguing against you and I doing this, threatened by the fact we doing this, they have NOT chimed in what it would take prove it for them....I suspect, they would not believe anything.  On the good note, some have chimed in simply seeing improvement enough for them....but, have not answer why LarryTheRunner's improvement not interesting for them.  I am just so confused. 

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llee08032
Posted: Sunday, February 19, 2017 8:32 AM
Joined: 5/20/2014
Posts: 4405


-Significant and consistent increases in scores on neuro psych eval in comparison to prior scores

-Improved memory

-Improved executive functioning skills 

-Improvement in language, word recall and communication skills 

-Improved functioning in daily living skills

-Decrease in avolition and apathy

-Improved mobility

-Improved vision

-Improved social acceptance and relationship skills

-Basically all symptoms reversed

-Autopsy results proving cure

-Return to premorbid level of functioning


The_Sun_Still_Rises
Posted: Sunday, February 19, 2017 10:42 AM
Joined: 7/24/2015
Posts: 3020


Thanks Llee, I real appreciate that. 

It looking like we will have run with neuropych results then. 

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julielarson
Posted: Sunday, February 19, 2017 11:20 AM
Joined: 9/30/2015
Posts: 1155


Sun, Until the neuropsych test was brought up I was confused about what tests would be the best.. I agree that that test in particular would be the test that would show definitively if Alz has reversed course.
The_Sun_Still_Rises
Posted: Monday, February 20, 2017 5:18 AM
Joined: 7/24/2015
Posts: 3020


Thanks Julie, much appreciate.

It is interesting note, that most CGs said subjective experience of seeing improvement....and only in this section did people say the Cognitive Testing....no one gave any labs.  I will, however, no doubt have a number of labs that I have improved (like reducing inflammation, reducing insulin levels, and reducing glucose levels).....if I am very lucky, I will reduce my auto-immune markers...and improve my O2 stats.  I guess others will just have draw their own conclusions from that.  And, if I have missed something simple and logical that I just couldn't think about....well, so be it....I can only do so much. 

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