What I’ve Learned from Living with Parkinson’s Dyskinesia

Everyone living with Parkinson’s experiences it differently, and people who experience dyskinesia are no different. The uncontrolled, irregular muscle movements that can be a side effect of carbidopa/levodopa impact people in various ways. It may cause wiggling motions, rocking and swaying, head bobbing, or other involuntary movements. And because dyskinesia affects people differently, techniques to manage and treat it vary.

What seems to be somewhat common, though, is that people who experience dyskinesia have stories about how they manage it. Recently, we reached out to people in our community who have dyskinesia and asked them to share stories, treatment ideas, and words of wisdom for managing it. Here’s what they said:

Staying active is one of the best ways to combat dyskinesia.– Cindy

“I like to refer to my dyskinesia as “poppin’ and lockin”’!
My dogs are now afraid of lamps (because I’ve accidentally bopped them on the head when my dyskinesia acts up while I am turning them off) and the kitchen (when I’m cooking). When cooking the other morning and doing my crazy dances, my leg decided it wanted to do some kind of ninja dyskinesia move which resulted in me kicking my oldest dog in the face. I guess ninja dance moves and cooking are very dangerous for animals. The only time they run in and out of the kitchen is when my hands decide to throw food their way. It’s a quick run, grab, run. I’ve never seen anything funnier, but at least my floor is clean of dyskinesia cooking episodes!
– Gretchen

Deep brain stimulation (DBS) solved my dyskinesia problem for a while since I no longer take carbidopa/levodopa. I now have what appears to be exercise-induced dystonia or dyskinesia—sometimes somewhat graceful and sometimes jerkingly, abrupt, and uncontrolled movements in my upper arm. The dyskinesia in my left arm feels like my arm is disassociated from the rest of my body. My arm movements take on a life of their own—but only when I exercise. Amantadine helps to a point, but I’m also very sensitive to this medication so can only take one dose per day. My Parkinson’s, dyskinesia, and dystonia are all part of what makes me “me.” I’ve learned it’s best to just roll with the punches, have a healthy sense of humor, and continue to live my life well.– Marty

Dyskinesia can be challenging when I try to do something requiring steadiness and annoying when I try to sit quietly with my husband. It can be frustrating because it’s hard to control, and because it takes energy to move, dyskinesia can leave me feeling exhausted.– JF

I make sure my nutrition is appropriately taken with respect to the timing of my dosage. I always take my meds at least 30-45 minutes before eating and always on an empty stomach. When I am bothered with dyskinesia, I make myself a flavored cup of coffee and sit down. (Coffee has been shown to help with dyskinesia.) If I’m getting too much medicine in a single dose, I take smaller doses more frequently and that has been the best solution for me. When I do have “the big D,” I do not sit down and wait for it to go away. I either ride my exercise bike, clean out a drawer, or do any activity that I can do in one place where I don’t have to move around a lot. Walking and tripping are dangerous for me when I have dyskinesia. And here’s my ace in the hole: I use CBD oil, and I have a few gummies that friends have given me. Finally, I’m part of an experiment begun by Dr. Robert Francis of the LSU VET School. He created a powder designed to clean the body and bloodstream to make a better gut-brain connection and allow the medicine to be absorbed better and, therefore, to work better. I’ve found that I sleep a bit better, I definitely have more complete bowel emptying in the mornings, and I generally feel better overall.– Jan

Medication for dyskinesia is an ongoing experiment, and patience is necessary.– Wendy

Do you have a dyskinesia story or words of wisdom you’d like to tell us about? Please send us an email at blog@dpf.org.

Learn more about Parkinson’s Dyskinesia

What Is Parkinson’s Disease Dyskinesia? 

The Difference between Dyskinesia and Tremor

How to Lead a Parkinson’s Dyskinesia Support Group

When Parkinson’s Dyskinesia Feels Embarrassing 

The What, When, Why, and How of Treating and Managing Parkinson’s Dyskinesia


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This post was written by the Davis Phinney Foundation.

This blog series is sponsored by Adamas Pharmaceuticals Inc.

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