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

How I Deal with Dyskinesia

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.

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 PD can be difficult, it can be beneficial especially if one is looking for a way to manage dyskinesia.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ParkinsonsDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Dan Glass moderator
    2 weeks ago

    As a former teacher, I feel you showed great courage in educating through dyskinesia. I’m sorry you weren’t able to get your awards. Nevertheless, I’m glad you put yourself out there with your advocacy.

  • rmdelano
    3 months ago

    Hi John, Who did the artwork at the top of the post? It captures the mood pretty well. When I get dyskinetic I tell people that I am preparing for an interview with the Ministry of Silly Walks. https://www.youtube.com/watch?v=E-eCfaGpyX8

  • Dan Glass moderator
    2 weeks ago

    great attitude!!

  • John Bennett author
    3 months ago

    Love the video!! Thanks for sharing. See Chris’ post re: artwork. I agree that it capture the mood pretty well.

  • Chris H. moderator
    3 months ago

    Great clip, @rmdelano! The artwork was created by one of our very talented art directors. I will surely pass your feedback on. Hope you’re well today. – Chris, ParkinsonsDisease.net Team

  • Erica928
    5 months ago

    I agree we have to let people know of our disease,and how it effects us. With me its my arm that’s shakes,usually during off times. Usually a half hour before a dose of levodopa.i am around young people so I sit them down and discuss my problem.

  • Dan Glass moderator
    2 weeks ago

    I’m glad to hear you feel open enough to share your symptoms with them. I find many people, young and old, are just curious, open, and accepting of our “new normal.”

  • Chris H. moderator
    5 months ago

    Thanks for sharing this, @erica928. What are their reactions typically when you discuss this? – Chris, ParkinsonsDisease.net Team

  • KittyDevine
    5 months ago

    I really appreciate your story and I agree that we must accept whatever situation we face in life and try to keep a sense of humour. I too suffer head bobbing from meds and luckily for me I work with women from India and I feel right at home!!

  • Dan Glass moderator
    2 weeks ago

    I recently read an article about how people who can laugh at themselves tend to be more emotionally intelligent. Humor is definitely a good thing. Thanks for sharing!

  • yarnie
    5 months ago

    Agree. For me, acceptance has been key to living with PD. If I accept, my friends and family can accept too. When I find myself in a difficult situation with symptoms showing, I just tell people what is going on, usually with a little laugh. They relax and I do too.

  • Chris H. moderator
    5 months ago

    This is great, @yarnie. Acceptance can really be the first step in being comfortable with discussing difficult situations. Thanks for sharing this! – Chris, ParkinsonsDisease.net Team

  • ReconDoc
    5 months ago

    Man, can I identify with this. Only it is my arm, not leg that does this, and at the most awkward of times, while I a sleeping. Many times my partner has had to wake me up, or most often, just got out of bed until the”danger” passed. All to often, I have hit her, and she quickly realized that the uncontrolled movements are a serious threat to her well being and I had no control of what was happening.
    I am seeing a new Neurologist next week and I have started a laundry list of issues to address at the meeting. This problem being one on the fore front. I thank Mr. Bennett for bringing up this issue, it is reassuring to know you are not alone.

  • Dan Glass moderator
    2 weeks ago

    I now have my own bed because of REM sleep behavior. I look at it as an opportunity to read until late. It beats thinking about how I miss putting my cold toes up against my wife!

  • Chris H. moderator
    5 months ago

    You’re certainly not the only we’ve heard that has unintentionally hit your partner in bed @recondoc. We have a great article that talks more about that in case you’re interested: https://parkinsonsdisease.net/clinical/rem-sleep-behavior-disorder/.

    Keep us updated on the appointment! – Chris, ParkinsonsDisease.net Team

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