What is dyskinesia? It’s a ten-buck medical word for wobbling around. – involuntary movement. Have you ever seen Michael J. Fox being interviewed? That head bobbing, body jerking and all those movements that make you squirm to watch is dyskinesia.
Dyskinesia can be a symptom of Parkinson’s and/or it can be a reaction to certain drugs, classically levodopa – what I call “fake dopamine”. Levodopa can have “on” and “off” periods. Dyskinesia varies a lot from patient to patient, but typically occurs during the peak period for the levedopa, dose, often with other PD symptoms well-controlled. The patient may not be aware of the dyskinesia – this unawareness is called anosognosia (another ten-buck word).
Dyskinesia is estimated to impact 30-90 percent of Parkies (an estimate so wide as to be useless). Here’s a slightly more precise estimate: “In a study, 70% of PD patients who developed onset of symptoms of PD between 40 and 49 years had dyskinesia after 5 years of treatment in comparison to 42% of PD patients who developed onset of symptom of PD between 50 and 59 years.”
These tidbits are from a webinar I attended in May, delivered by Dr. Ryan Walsh, a movement disorder specialist from Barrow Neurological Institute/St. Joseph’s Hospital in Phoenix. This May the World Parkinson’s Coalition put on four days of virtual webinars, which was certainly cheaper than flying to Barcelona, where their 6th triennial conference will be held in 2023. If you wish to hear the webinar, contact me for the password. The webinar will only remain posted until August 20, 2021.
So what do you do about dyskinesia? The first thing is nothing, it’s really up to the individual Parkie how much this impacts quality of life. If you want to manage it, your doc may experiment with reducing your Sinemet (carbidopa/levidopa) and/or changing the timing and/or spreading out the Sinemet. Sinemet is normally taken every 4-5 hours, but there is a Sinemet ER (Extended Release) which spreads itself out over 6-8 hours. There’s also Duopa, the brand name for a product that uses a surgically implanted pump to steadily feed carbidopa/levidopa directly to the intestine.
My dyskinesia is very mild and not continuous (Thank God). I call it my “Bozo Doll” action because I feel like I’m bobbing around like one of those inflated toys you push over and it pops right back up. I first reported Bozo in 2018 (not coincidentally when I first started using Sinemet). I held off on doing anything about it until mid-2020, when I asked my doctor for a prescription for Amantadine. This drug is the only drug specifically approved for dyskinesia. Worked like a charm – no bobbing, no Bozo….for now. Yay! And another Yay! — Dr. Walsh reports that there are three world trials going on right now for new dyskinesia drugs.
YouTube extra: Bozo the Clown show from 1966. Remember watching cartoon shows like this after school? This one makes me cringe – if you weren’t afraid of clowns before, you will be after seeing Bozo.