Michael J Fox dyskinesia gone?

[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?

[laglag]

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 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..

[laglag]

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

[GymBag in reply to laglag]

michaeljfox.org/foundation/...

this works

[ConnieD]

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 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.

[Serenity_finaly-1 in reply to laglag]

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

[ConnieD]

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

[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.

[ConnieD]

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 .

[GymBag]

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 in reply to GymBag]

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

[WinnieThePoo]

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

[ConnieD]

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 !!😊

[Bythejerseyborder]

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.

[ConnieD]

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

[Cagey84]

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