Michael J Fox dyskinesia gone?: When I was... - Cure Parkinson's

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Michael J Fox dyskinesia gone?

ConnieD profile image
ConnieD

When I was at the supermarket in line I saw a magazine that claimed he was cured , inside it's not a cure but he is quoted as saying he "stumbled" upon a new combination of medications that greatly reduced his dyskinesia. (Not an exact quote but close) I find dyskenisia one of the most difficult parts of PD. Amantadine for me worked great but only for a few months. Anyone have any thoughts on what combination he may be using?

17 Replies

I've always wondered what supplements he uses also, as well as what meds he uses. Seems like I've heard he had DBS, but someone said he had a different type of brain operation. I'm surprised he doesn't make that a little more public, at least to PwP's and especially if he finds something that works or doesn't work, but maybe I don't know where to find that kind of information.

ConnieD profile image
ConnieD in reply to laglag

Yes I wish he would share what works for him, the article quoted him as saying it was more than one drug but I wonder if legally he can't discuss something like an unapproved supplement. Also I had seen somewhere that he had surgery that wasn't too successful many years ago but not DBS yet..

I just found this article dated 8-24-17.....michaeljfox.org/foundation/...

GymBag profile image
GymBag in reply to laglag

michaeljfox.org/foundation/...

this works

Thanks for your responses his symptoms seem better these days so I'm curious what helps him. Amantadine didn't help me for long but maybe it will for others.

laglag profile image
laglag in reply to ConnieD

If I'm reading the article correctly that GymBag attached, they're coming out with an ER version of Amantadine that should work better.

Ooo I hope it does not turn into a expensive Rytary thing.

Thank you I see my neurologist in a few weeks and will ask her about it.

Hikoi profile image
Hikoi in reply to ConnieD

Connie

In the first year of my diagnosis I remember reading a posting on a forum from a woman who took Amantadine. In her experience it stopped working after a while but if she had a short break and then took it again it worked. Just relaying another’s experience - not recommending this.

Thank you for the information. I may try it again, when it worked it was great I felt better than I had in a long time .

My first Neuro said that the Amantadine effectiveness might diminish after a few years. After 5 years he died and second neuro said that I might as well stop taking because he doubted it was still effective. Life was miserable. My 3rd Neuro ( motion disorder spec.) said that the story about Amantadine loosing effectiveness was false and he put me back on.

MUCH much better, 15 years now still working.

ConnieD profile image
ConnieD in reply to GymBag

Thank you Gymbag !! That gives me hope!!!

I can't prove the provenance, but a good friend locally (who is a recreational marijuana user) recommended me I investigate CBD oils "as used by Michael J Fox". Since I didn't know what a CBD oil was at the time, he sent me a link (which I now can't find). But there is a good chance MJF was using CBD. Maybe the CBD community know these things

Thank you for that info, I do think CBD oils as well as medical marajuana which is legal in my state could be helpful, I think the difficulty is finding the dose and type that is right for you. I never had it recreationally and have only tried the tincture a couple times but didn’t like the way I felt but need to try it again. Thank you for the response !!😊

I take an indica tincture. It is 50 % CBD and 50% THC. It does not make me high. Just a little chillness. I do believe it works. I will take a higher %THC before bed.

Thank you can you tell me Where are you ordering it from?

According to MJF’s Wikipedia page, he had a thalamotomy in 1998 and manages symptoms with C/L

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