For all that want to know what Michael J ... - Cure Parkinson's

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For all that want to know what Michael J Fox new drug regimen is here you go.

WayneP profile image
17 Replies

It's Official: Michael J. Fox Has a New Show! (So Is He on a New Drug?)

Posted by  Holly Barkhymer, August 22, 2012

As you've probably heard by now, Michael J. Fox is set to create and star in his first sitcom since "Spin City"! The as-yet-untitled comedy will premier on NBC in fall 2013 and will be loosely based on Michael's life.

All of us at the Foundation are thrilled and can't wait to welcome Michael into our living rooms once a week! (Some of our staff are so young they don't even remember "Family Ties.")

On a slightly more serious note, some reports have linked Michael's ability to go back to work, after more than 20 years with PD, to a supposedly new treatment or therapy. We traced this back to a statement Michael made to Diane Sawyer during an interview with ABC News and Yahoo! News from May:

Diane Sawyer: ...This is a pretty great professional trajectory here.

MJF: I did some work earlier in the 2000's... and I enjoyed it but I found it challenging. And then I kind of stumbled on a new combination of meds that reduced what is called dyskinesias which I had really bad earlier which was [moves back and forth] which is that movement. And once that was tackled, to the point where I can be as still as I am now, I thought, there's no reason not to work.

DS: You say you stumbled on a new combination of medicine? Stumbled?

MJF: ...[T]here's a drug that previously was used to combat the flu with older people...they found out that for those older people that had Parkinson's and took Parkinson's medications that had dyskinesias, that it worked effectively on a large amount of the patients that took this medication. So it eventually got repurposed...well now I have less dyskinesia and don't get the flu. So that's kinda nice.

This is not the first time Michael has publicly discussed his personal experience with the drug amantadine, which, while not an approved treatment for dyskinesia, is commonly prescribed off-label to address the disabling side effect of long-term levodopa therapy. He has spoken over the years about the benefits of his individual "drug cocktail" in combination with an active lifestyle. However, in all aspects of Parkinson's disease, patients' experiences vary widely.

First and foremost, it is critical that anyone living with Parkinson's work closely with their health care provider to determine their own, optimal treatment regimen.

Secondly, response to amantadine is far from consistent across patients, and the drug is not well-tolerated by everyone. Some of the more common side effects include blurred vision, digestive issues, dizziness, drowsiness, lightheadedness and trouble sleeping.

According to Irene Hegeman Richard, MD, a member of our Scientific Advisory Board, "In terms of whether amantadine... really takes care of dyskinesia, it does not. A lot of patients don't tolerate it. It can have various side effects. And it's not fully effective. It may not completely block dyskinesias, and for some patients it doesn't block them at all. It's better than nothing; we use it and in some patients it can be very helpful. But it's not enough."

It bears repeating: What works for Michael J. Fox (or any individual patient) doesn't work for everyone. If you have PD, work with your health care team to tailor a therapy regimen that works for you.

The biggest problem MJF had to working full time was simply the fact that as an actor he has to be able to control his body movements and until of late he simply was unable to do so for an extented period of time.

Hope this answers some questions for people out there.

Wayne

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WayneP
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Beachdog profile image
Beachdog

Thanks ... worth knowing. Might work to minimize the bobble-head ;o)

WayneP profile image
WayneP in reply to Beachdog

Just my thought as well.

Carrigan profile image
Carrigan

Thanks always interesting to get information, take care now x

CJ49 profile image
CJ49

I've been on Amantadine for some time now. With that I also take Carbidopa/Levo and Azilect. I get some instances of Dystonia but no Dyskinesia.

I guess it all depends on what "combination" of medication is used as to the side effects they produce. Then again what works for one person may not work for another.

I do think the treatment of many complaints not just PD is such a difficult process, All these various drugs out there used singly or in combination. If it was the lottery you may never find the right combination of drugs which work effectively.

I think it is the unexpected Eureka moments when scientists suddenly fall on some drug which by accident treats another complaint quite unrelated.

How lucky is that?

I think the proof of Michael Fox being an acting success again might well be a breakthrough.

WayneP profile image
WayneP in reply to

We might never know the real truth but he is the founder of MJF Foundation and who is to say he is not taking some drug/drugs that are in development. If anyone has access to such it would be him.

Beckey profile image
Beckey in reply to WayneP

The access part may be true, but I think he would share whatever information he had with the public if he began any kind of medication that was still in development. I think highly of the way he runs his organization -- for instance, giving 89 cents on the dollar to research, which is very high.

BS

Hikoi profile image
Hikoi

I'm pleased for Michael and i think he has been and continues to be a great advocate for people with parkinsons. I'm not at all critical of him rather how the media interprets things.

I feel a bit unsure what messages the public are getting about PD from this. Something like if you sort your meds out you are able to work? Certainly Michael will be able to because the job will fit around him and his heatlh at any given time. Most people however arent that fortunate, they have to fit around the job.

Amantadine has been known to help parkinsons symptoms since 1969. Seems strange he has not tried it before.

Anyway I'm looking forward to seeing the series.

wifeofparky profile image
wifeofparky

Thanks for the info.

larry33b profile image
larry33b

I am surprised that it took MJF all this time to find Amantadine. I have luckily been on it for eleven years and take almost 2ooo mg a day of carbidopa/levadopa. Yes it has some down sides but it works.

WayneP profile image
WayneP in reply to larry33b

Like it stated above, I would not be surprised if he was really taking something new in development that others can't get hold of. He could get it if anyone could.

MagicMax profile image
MagicMax

Amantadine worked well for me. I dropped using it because my new neurologist said I was being over-medicated. He had me go off it "cold-turkey," and wow did that hurt (see side effects on drugs.com). I had to go back on it, then wait a month and go off it slowly. I also changed neurologists. I was happy to stop taking it since it takes (SLS) sodium lauryl sulfate to make this medication. There are hundreds of articles on the internet as to why you should never be in contact with SLS. It is in soap, shampoo, shaving cream, toothpaste, makeup, and most other cleaners we use around our brain (Interesting!)!

froggatt55 profile image
froggatt55

I am one of the lucky ones who can tolerate Amantadine. I have taken it (together with Requip, Sinemet and Azillect (Rasagiline)) for about 4/5 years. I started it for my tremor - no joy - but read about It's benefits for dyskenesia so kept on with it "believing" it would prevent or delay the onset of dyskenesia - thus far (I'm 9.5 years since diagnosis) no dyskenesia"

I should add that no Neurologist I have consulted has shared my beliefs but they have left it in my cocktail

cabbagecottage profile image
cabbagecottage

is Dyskinesia very much different to Myclonic jumps and jerks .

jOhn seems to get a mix of both Dystonia , Dyskinesia and the Myclonic

Beckey profile image
Beckey

Amantidine was a horror for me -- it gave me jumps, jerks, spasms and general weaving, bobbing and clattering. When I quit it, I went back to just having a right side tremor within a couple or three days.

WayneP profile image
WayneP in reply to Beckey

Yes, it is a hit or miss with some drugs. What works for you might cause me issues and vis versa.

What may help me can cause you to stop gambling like a crazy person.

Strange disease...

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