What does conventional medicine have to o... - Cure Parkinson's

Cure Parkinson's

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What does conventional medicine have to offer? Hope is not measurable.

Coling profile image
29 Replies

I was diagnosed 18 months ago and have stayed off the Pharmaceuticals up till now.

I am 65 and I live in Australia, home of a myriad of opinions froms very conventional neurologists to CBD oil proponents. I am traveling to the UK for a month next week.

I am interested in being the guinea pig for any trials not only for my sake but in the interests of helping others (that would be great). So if you hear of anything please let me know.

My symptoms are progressing so resting tremor, night terrors etc. I am now ready to take conventional medicines to give it a try. I will continue to take the exercise route.

I went and had baseline testing for a new trial, the neurologist is well respected but gave me no hope of a cure anytime soon.

I left depressed. No doubt he wanted to spare me any false hopes but frankly hope, whether false or real is what keeps me going. I love to hear progress and new discoveries.

So if anyone has any good news stories please let me know I really get a lot out of your posts thank you, it keeps

dancing rather than drinking.

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Coling profile image
Coling
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29 Replies
alexask profile image
alexask

Did you ever try Mannitol?

Coling profile image
Coling in reply toalexask

Hi Alex, I am currently trying Mannitol a spoonful a day and it seems to have no effect, how about you?

alexask profile image
alexask in reply toColing

Well it works for me - combined with coconut oil, melatonin, hoppy beers and exercise. Did you have previously had any problems with your sense of smell and have that improved?

Coling profile image
Coling in reply toalexask

I do has very poor sense of smell and no improvement what dose do you take

alexask profile image
alexask in reply toColing

A heaped teaspoon a day. Sorry it doesn't appear to work for you. Everyone seems to have a different version of parkinson's.

Coling profile image
Coling in reply toalexask

what is your melatonin dose if you dont mind me asking

alexask profile image
alexask in reply toColing

between 1 and 5mg. Though I have seen 10 mg recommended

Coling profile image
Coling in reply toalexask

Many thanks xalex

munchybunch profile image
munchybunch in reply toalexask

What are hoppy beers?

alexask profile image
alexask in reply tomunchybunch

usually a brown beer made with hops. Best enjoyed in the company of others.

munchybunch profile image
munchybunch in reply toalexask

How much coconut oil do you take pls?

alexask profile image
alexask in reply tomunchybunch

It varies, but generally 2 or 3 teaspoons a day with coffee generally.

Bailey_Texas profile image
Bailey_Texas in reply toColing

I just have one question why no "Pharmaceuticals". So many people here try to not start Pharmaceuticals at first. They can and most likely will enhance your life. There is no medical reason wait. Every day you delay is a day lost.

Good luck finding the right meds and the right natural things to help you in your battle with this thing we call Parkinson's

alexask profile image
alexask in reply toBailey_Texas

I think in general because many have awful side-effects. But sinimet/levedopa seems to be worth doing.

Bailey_Texas profile image
Bailey_Texas in reply toalexask

True they can but they go away if you stop the med. Still the good out weighs the bad.

Good day

ruff1 profile image
ruff1 in reply toalexask

They don't all have awful side effects for everyone, my husband started on Ropinerole, slight nausea, which disappeared after a few weeks , then Stelevo was added after a few years - orange urjne but you can live with that !! Then Asilect - again no side effects. He's been diagnosed 11 years and has a great quality of life , plays golf, runs - doing a half marathon in October, goes to the gym, paints , messes with his cars. Is careful with his diet and only has occasional glass of wine , but life could be much worse 😀😀😀

park_bear profile image
park_bear in reply toalexask

It is worth doing. I recommend the "CR" controlled release version instead of the immediate release which seems to be the version the MDs default to.

Astra7 profile image
Astra7

Have you looked into NAC? I am a big fan of it. I was also diagnosed 18 months ago and live in Perth.

Beverly2017 profile image
Beverly2017 in reply toAstra7

Please explain what NAC is.

maricor828 profile image
maricor828 in reply toBeverly2017

N-acetyl cysteine

maricor828 profile image
maricor828 in reply toAstra7

Me too, it helps me a lot.

Taking it with mucuna.

M_rosew profile image
M_rosew

Have a look at pdwarrior.com

Excercise is essential, and Australia is the home of PD Warrior physiotherapy! (Also available in UK).

Don't depress yourself thinking too much about your condition. Make sensible alterations to 'future proof' your home, and do things you enjoy.

Keep dancing, the music really helps.

Motherfather profile image
Motherfather

well im from perth my-self. next week im off for some stem cell treatment i know it dont cure it but if it helps then thats good.will keep u posted.im off to china.

Coling profile image
Coling in reply toMotherfather

Good luck in China 😎

Beverly2017 profile image
Beverly2017 in reply toMotherfather

Good luck...hope it works...how bad are your sympToms. Please tell us everything...cost? Where in China..website? Have you talked to anyone that's had it done in China? I'd really like to know how you decided to have stem cell treatment?

munchybunch profile image
munchybunch in reply toMotherfather

Can you tell us more about yr treatment pls? Where? How much etc.

FMundo profile image
FMundo

Google this: "Parkinson's disease study caught in feud involving Fox Foundation" IMHO this drug has the best promise (and I've been closely tracking drugs that hold hope for effecting progression of PD. I have less interest in those the "treat symptoms."

park_bear profile image
park_bear in reply toFMundo

I am very skeptical of Moussa's claim of no adverse effects. Nilotinib has its fair share of toxicity - 40 % of patients get adverse skin reactions - personally I experienced that kind of reaction at a very low dosage. MJFF has been accused of bad motives in this matter. I do not agree. Moussa says MJFF wanted to do things that would cause unnecessary delay. AFAIK MJFF has not spoken out about their side of the story, but according to Moussa they wanted to confirm findings he says he has already made. I agree with MJFF that such confirmation is in order.

Meanwhile both NAC and exenatide have both been shown to improve PD.

DEAT profile image
DEAT

I take Madopar 150 x 3 times daily. Never had any side effects and works well for me.

If we dont know the cause of PD is it even possible to find a "one size fits all" cure ?

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