Medical Cannabis For Dyskinesia?
My husband, Rob, suffers greatly from dyskinesia, those involuntary movements caused by being on the carbidopa/levodopa for over 20 years.
These movements are different from the Parkinson's disease (PD) tremors. Dyskinesia usually shows up as twisty, turny movements, often of the head (think of Michael J. Fox), or in my husband’s case, his torso and his legs.
Dyskinesia can appear at various times in the medication cycle. For Rob, it appears shortly after taking his PD meds and also when his PD meds are wearing off. It is very difficult to watch and I’m sure it’s even more miserable to experience.
Trying different medications
The medication commonly prescribed for dyskinesia is amantadine and Gocovri, an extended-release form of amantadine. Rob has tried both of these with mixed results.
After years on Amantadine, it just wasn’t doing anything for his symptoms so we switched to Gocovri. At first, Gocovri seemed to make quite a difference and we both noticed that his dyskinesia lessened, both in severity and duration. This was so exciting! Finally, we had something that really was working.
However, after his second COVID vaccination his PD symptoms seemed to worsen in general, with more falls than usual. The Gocovri didn’t seem to work at all anymore for his dyskinesia. We were terribly disappointed.
An answer to the problem?
Years before we had used medical cannabis, legal in the state of New Mexico, for Parkinson’s for Rob’s dyskinesia. It had worked fairly well so we decided to give it another try. An interesting experience started to unfold.
After taking just 1 quarter of a small cannabis “gummy” (THC not CBD) Rob’s dyskinesia disappeared within 15 minutes. And it continued to bring him relief for several hours. One gummy lasted the whole day and more. This was amazing.
Had we finally found the answer to his dyskinesia problem? Perhaps. It also seems to help when he can’t fall asleep at night. But the jury is still out. We have only been using the medical cannabis gummies for a few weeks. We need to see if this is going to work long term or not.
Surprised at the results
But another curious result of the medical cannabis is that Rob isn’t falling as often as he had been. He seems to be able to walk better when using the gummies. He can even walk without his walker! How can this be? Shouldn’t he be falling more or at least be more unstable?
Obviously, we are not doctors or scientists, just a couple living with Parkinson’s and trying to find answers to our every day issues with this diagnosis. We are as stunned with these results as anyone would be. Will they last? Who knows. For us, we are thrilled to have this reprieve from the plague of dyskinesia, however long it lasts.
Travel this PD journey well, my friend.
Have you ever tried journaling?