Parkinson's Movement
12,404 members11,021 posts

Thoughts?

I respectively suggest that after 50 years + of research that has little to show for it, maybe it time to start looking elsewhere

Any thoughts?

54 Replies
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sealed with a kiss....

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4g thiamine HCL day, divided two doses, am and pm

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6 week mark...no change yet....waiting...

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Distraction is a good tool to help get out of the loop of fear

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if 4g thiamine (or any other remedy) just only reduce the progression of the disease how we will see the change ...

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Within two weeks of starting this protocol it improved my intestinal peristalsis. Visits to the bathroom now work more efficiently rather than requiring a lot of patience.

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park_beer, I was responding to Toogood, who wrote "6 week mark...no change". My point was: we lack a tool to measure success in a case if a remedy just slow down the disease ...

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Roy, per Dr. C's recommendation 2g thiamine-HCL per 60kg weight--divided two doses.

Was 4g the initial dose? Is your weight 120kg?

I'm seeking clarification. Your testimony is encouraging.

Thank you for sharing.

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4g a day was his recommend directly to me. Without considering my weight.

Today is my 8th week. 7th week of no constipation.

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Thank you, Roy!

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Bit harsh Park Bear? Had it never crossed your own mind that the disease is too nebulous and wide in its aetiology to be concluded successfully?

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You have just demonstrated perfectly how society uses bullying as a way of suppression!

This is the way during WW1 they got soldiers to go over the trenches to there deaths despite there bodies telling them otherwise.

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Tell you what - let us toss the last 50 years of medical research and assume you are right - that Parkinson’s really is a useful response to stress that has arisen as a result of evolution. So what do we conclude if that is the case? Why, we conclude everything is just normal and peachy keen! There is no problem! There is no illness! Nothing to complain about!

All the poor sufferers that are haunting this message board need not bother anymore. No need to waste any time here. Just get on with life.

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There. Is that better?

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Each new personality change of mine was my way of running away and then coming back under a new identity. coping mechanism.

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😇

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I also have difficulty with proper English usage.

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Stop attacking each other. We are all in the same boat. Quite a few Neurologist and science researchers actually have Parkinson's or similar disorders.

facebook.com/JAZZL0UNGE/vid...

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I not attacking just gentle pointing in the other direction, sorry for poking the bear but had it coming!

Yes we are all this together but a ship going in the wrong direction takes some turning?

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Also I was using it as an example

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Good choice of song sing it I'm choir

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park_bear, I do not suggest that "the last 50 years of medical research into Parkinson's was worthless" because I don't agree with the statement.

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Agree you did not suggest anything of the kind.

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Could it be the way we have lived and therefore a clearing of what needs to be cleared.

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The time has arrived to consult the humble Boesman/Bushman of the Kalahari desert for a cure!!

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🙃🙃

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Man I love this, I get to vomit my ideas and you get to fight about it. I like this much better.

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I am usually told I think to much and quit irritating others.

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Hal ? is that you in there?

I like it

I wont tell anyone. hehehe

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Just tell me when to stop. I have lost that filter too.

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🤣

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Time has arrived to say goodbye to the so called neurologists. they only know the names of a few drugs that supress symptoms and don't know about the disease itself. I am astonished that most of them are unaware of mucuna , which I thinkis the best treatment so far

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"So called" nope , they really are neurologists , University for BA then med school then specialization for Nero, then more school for Movement Disorders can you imagine the cost and how increasingly boring treating people like you and me must be. Poor neurologists, so sad.

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I am using the word so-called as after completing all the steps as you mentioned (University for BA then med school then specialization for Nero, then more school for Movement Disorders), they don't know neurologically the root cause. They learn few symptoms of the disease and can tell someone after few checkups that he has PD. After letting you know the bad news , can do nothing about the disease except prescribing a medicine among a list which do nothing except suppressing the symptoms. In my opinion an experienced PD patient better understands the disease. And I am doing a prediction here that the cure will one day be invented by some patient

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I am in total agreement with you how can they fix something that they have no understanding of☺

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Welcome to my world

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I couldn't agree more, it would help if they knew what they were looking at!

There science is flawed, and looking in the wrong direction

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We must find out for ourselves. Listen to our biodiesel. Look inside what happens to us by way of meditation , TRE, yoga, boxing, exercise, feeling ourselves properly. By the way : this is an international website So stop critising us about our english and stop bullying

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Listen to our bodies my iPad sometimes changes my words

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I enjoyed the biodiesel myself! Lol

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Well said, people need to do there own research rather than to criticise someones spelling! If that's there best argument I would remind them that Einstein was dyslexic help to think outside the box. I encourage any genuine discussion

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My husband is dyslexic besides having PD and is sometimes very amusing what he comes up with in his spelling!

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Really you were so right besides many of us with Parkinson’s can’t type anymore and we are using a voice activated application that doesn’t work

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The word to discuss is "chronic" no one accepts it. Surly they will find a cure in my lifetime with the wonders of the scientific age they say,all we have to do is throw money at it. The answer is probably no. Have the followers of religion or of do it yourself investigation done any better, the answer is no. Maybe there is no cure and there never will be. Maybe this is as good as it will get and we should just enjoy what we can of life and get on with it. Park Bear is a bit grumpy, but he is smarter than the average bear and it really has not been that long since Levadopa/Carbadopa came on the scene in the 50's. Humans have had this disease for thousands of years, it takes time. Everybody lower your expectations of others and work on your own happyness. Enjoy yourself , it is later than you think.

ca.video.search.yahoo.com/s...

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I agree with you about being chronic and is individual to each one of us. This is not something that happens overnight but a mixture of lifestyle and chance, but the many different paths evenentuly lead to the same place "Parkinsons " I strongly believe that longterm exposure to high levels of stress and the suppression of it is like storing toxic waste? It needs to be delt with safely and regularly as our body does with food. Unfortunately society has lead us to suppress and bury stress and fear as if it was a bad thing to openly show emotions. I ask the question why do on diagnoses a number of people decline rapidly? Like the old saying the final nail in the coffin after running the body against all the red warning lights it goes into rapid response to immobilise to stop further damage! I don't think there is a cure as such but many improvements and slowing is with the right approach. As with most things prevention is better than a cure.

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I know a few people in the world who changed their believesystem about PD Bianca Molle Howard Schiffke for instance. They told themselves it can be cured and it is not chronic.

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mind over matter ?

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Oh finally someone has put to paper my thoughts too.

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Welcome it's been a long time coming ☺

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Go on Mulberry expressing your wonderful ideas

You give me inspiration

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Has my brain become a search engine trying to figure out what is going on in there?

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The neurotransmittors are out of balance. Too much cortisol too little relax neurotransmittors like dopamine serotonine and oxytocine.Too long in stressful situations. Concentration on degenerative and chronical makes the cortisol level go up. Having peace with the here and now makes it go down and dopamine go up. That is why meditation and yoga helps. When I really gget into a meditative state my tremor becomes less. Alpha waves in stead of beta waves in my brain. Worrying is not helpfull. Donot try to reach anything just this just this very moment. Also when it is with tremor stiffness storm. Let the storm be. It will pass

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agree MMMMMMMMMMMMMMM

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PD and other brain disease cures:

Phase 1: those of us that are more advanced, the different variants of Ldopa (inhaler, injections, duopa, etc.) are all we have to keep the quality of life acceptable until we die.

Phase 2: slow down PD progression; neuroplasticity is the answer for those of you that have just gotten PD; there is hope!

Phase 3: find the cure; this will take an entirely different approach than currently being used.

I am a mechanical engineer in aerospace/aircraft design; I love problem solving and I have figured out a bunch of complicated things concerning aircraft over 28 years in the industry. @ 51 years old, I am retiring and will be working on phase 2. When I resolve #2, then onto phase 3. Michael Fox foundation is a good idea but they think the same way all medical industry type organizations think and operate. Aircraft systems all work in tandem and must be coordinated and intra communicating with each other; in most cases adjusting to a given situation (wind, moisture, electro magnetic disturbances, etc.) The body strives for homostasis (complete balance) and when out of sync, it makes changes to get back to that preferred condition; doctors and medications are interfering with this key balanced state. Aircraft are in constant flux about the center of gravity (C.G.) and there are a number of forces and environmental conditions that push the aircraft out of the preferred balanced condition about this C.G.

Sound crazy and cocky? I am not waiting for more clinical studies. We just need to apply what we have learned in a constructive way.

More info later if anyone is interested.

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