Man with dyskinesia sitting watching a stadium with an event going on from afar

How I Deal with Dyskinesia

Parkinson's disease (PD) can be a socially isolating disease due to the embarrassment patients experience when they’re symptomatic. I know there have been a few times when I decided not to attend a social function for fear that I would not be able to manage my symptoms.

This is the hardest thing about having PD and is something I’ve had to work on as I don’t want my disease to prevent me from living life fully. I am inspired by fellow Parkies like Michael J. Fox who remain in the public eye despite being symptomatic. Still, it hasn’t been easy.

Awkward moments

The symptom that is most problematic for me is dyskinesia or involuntary movements that are often a consequence of long-term levodopa therapy. For me, the problem started after having been on levodopa therapy for 4 years.

My dyskinesia affects one of my legs and I can’t walk without it flailing about. I call it my “wacky” leg. Sometimes, I can predict when this will happen and how long it will last. But there have been a few instances when I would unexpectedly become dyskinetic.

Once I was in a supermarket and midway through my shopping trip my leg decided to do its dance. I was using a grocery cart that doubled as a walking aid. Unfortunately, my cart was full so rolling it out of the store to the safety of my car was not an option. I didn’t want to check out because I wasn’t sure I could.

Luckily, the store had a motorized cart that was available. The challenge was getting to it without causing a scene. I pushed my cart to where the motorized cart was and, as best I could, hobbled over to it and was able to continue shopping.

Missing events

When I was teaching, I was concerned that I would become dyskinetic during class and wouldn’t be able to walk out of the classroom. I recall one class when I told my students that someone might have to go get the wheelchair I kept in my office in case my leg went “wacky.” Thankfully, it didn’t and I was able to walk albeit unsteadily to my office.

To help ensure that my leg did not get too stiff during class, I started to sit on the desktop until the disability services office placed a stool in my classroom.

When I received a prestigious teaching award at my university, there were several public events including a football game where the awardees were to be honored at halftime before a crowd of 70,000 and at the Homecoming parade that the awardees were to ride in. I missed both due to my fear that I would be symptomatic.

The benefit of opening up

Whenever I would have these “wacky” leg episodes, I would get some surprised looks. At first, it bothered me to attract attention this way, but it happened so often that I learned to accept it.

When it happens I am tempted to hold up a sign saying that it is a side effect of my medication and not that I'm intoxicated because that is often what it looks like since I am off balance and stumbling around.

This is one of the advantages of coming "out" about PD. People will know that it’s PD causing the problem. Being more open about my PD also reduced my stress level, which I have found to be an effective means of managing dyskinesia. So, while being open about the condition can be difficult, it can be beneficial especially if one is looking for a way to manage dyskinesia.

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