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

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.

29 Replies

  • Did you ever try Mannitol?

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

  • 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?

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

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

  • what is your melatonin dose if you dont mind me asking

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

  • Many thanks xalex

  • What are hoppy beers?

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

  • How much coconut oil do you take pls?

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

  • 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

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

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

    Good day

  • 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 😀😀😀

  • 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.

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

  • Please explain what NAC is.

  • N-acetyl cysteine

  • Me too, it helps me a lot.

    Taking it with mucuna.

  • 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.

  • 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.

  • Good luck in China 😎

  • 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?

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

  • 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."

  • 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.

  • 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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