This is a special bonus episode of When Life Gives You Parkinson’s that we are calling Extra Dosage. Full episodes of Season 2 of the podcast will be released every other Wednesday beginning in September 2019.
In this episode of When Life Gives You Parkinson’s, I turn to friends and fellow people with Parkinson’s who have been dealing with dyskinesia longer than I have.
Becca Miller, 45, is a psychologist at a community mental health centre in New Haven, Conn. She was diagnosed with Parkinson’s disease six years ago and began to have dyskinesia two years ago. Jim Smerdon, 45, has been living in Vancouver, B.C., with Parkinson’s since 2007. His dyskinesia was so severe he opted for deep brain stimulation (DBS) surgery in 2014 in search of relief.
What is dyskinesia? If you were to imagine Michael J. Fox in your mind right now, you’re probably picturing the guy from Back to the Future or The Good Wife. Think about when you’ve seen him interviewed on TV news programs or when he testified before the U.S. Congress, though: those uncontrolled, involuntary movements Fox is known for are not symptoms of Parkinson’s. It’s called dyskinesia.
It’s a reaction to long-term levodopa use. Yes, the gold-standard drug treatment for Parkinson’s, when taken over a long period of time, will effectively treat some of your PD symptoms like tremor, slowness and stiffness but also cause you to move uncontrollably. The Michael J. Fox Foundation describes dyskinesia as fidgeting, writhing, wriggling, head bobbing or body swaying.
It is important to note that not everyone with Parkinson’s will develop this complication. It is more common with people who are diagnosed with Young Onset Parkinson’s disease (YOPD) or are under the age of 50.
There was no guarantee I would experience dyskinesia. I didn’t particularly want it. And in the end, I didn’t really have a vote.
After my family returned from World Parkinson Congress in Japan in mid-June, I was jetlagged and my med times and dosages were a bit out of whack. That’s when dyskinesia took hold. It had only ever really happened once before, about six months ago. I do sometimes sway and jerk a bit here and there but I am a relative stranger to experiencing a full-on dyskinesia episode.
It was Saturday night, my family was at the dinner table, and I started to sway and rock — slowly at first, then gradually faster and more erratic. My head started to go to the right, my shoulder popped to the left, my neck jerked back and forth. And it repeated over and over again.
About five minutes into the dyskinesia, I asked my wife Rebecca to record a video.
The dyskinesia lasted 45 minutes. I posted the video on Facebook, Twitter and Instagram accounts. For friends and family who have not witnessed many physical symptoms of my Parkinson’s, this came as a shock. For people familiar with PD, my episode was rather mild.
Two days later, I was at a manager’s off-site meeting with 18 of my colleagues, and dyskinesia set in again. It lasted an hour. And then it happened a day later during my exercise class. I was doing a bear crawl, and it was as if the bear was drunk. I couldn’t tell my feet what to do anymore. It lasted 30 minutes.
That inspired me to talk to my guests to get them to answer some questions I had about dyskinesia, and some that my friends and family posed to me after watching the video.
Also in this Extra Dosage episode, we discuss the Michael J. Fox Foundation’s announcement about a series of free, day-long live events called Parkinson’s IQ + You. MJFF Deputy CEO Sohini Chowdhury joined the podcast to chat about the events.
“The goal is to create a forum where we can share information with Parkinson’s patients, family members, friends, all with the goal of empowering people with Parkinson’s and care partners so they can optimally manage their disease and learn more about participating in research,” Chowdhury said.
The Parkinson’s IQ + You series is exciting for a number of reasons, but most relevant to me is that I have been asked to travel with the Michael J. Fox Foundation and be the host and moderator of these events across America. You can find more information at www.michaeljfox.org/PDIQ.
There are also other events I will be attending in the coming months that were mentioned in this episode.
- Saturday, Aug. 15, 2019 — Join me at Tour de Fox Pacific Northwest in Port Coquitlam, B.C. Details can be found here: https://tourdefox.michaeljfox.org/pacificnorthwest.
- Saturday, Aug. 24, 2019 — Join me in Pickerington, Ohio, for the inaugural Tremor Trot. My nephew Anthony and his family are working with Team Fox on this family-friendly 5K. You can join us or donate to the When Life Gives You Parkinson’s team.
- Sunday, Sept. 8, 2019 — I am the emcee and a walker for the Parkinson Society British Columbia’s Parkinson SuperWalk in Vancouver. Funds raised through this event help to provide valuable support services and education offered by Parkinson Society British Columbia in B.C. as well as fund research efforts. You can also donate to the When Life Gives You Parkinson’s team.
- Saturday, Sept. 14, 2019 — I will be in Atlanta, Ga., for the first Parkinson’s IQ + You event. Register for free here.
If you have a comment or question about the podcast, you can email us at parkinsonspod@curiouscast.ca.
Follow me, Larry Gifford
Twitter: @ParkinsonsPod
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Follow co-host and producer Niki Reitmayer
Twitter: @Niki_Reitmayer
Special thanks to:
Becca Miller, Jim Smerdon, Emma Lane, Sohini Chowdury, Rebecca Gifford and Henry Gifford
When Life Gives You Parkinson’s was selected as one of Apple’s best podcasts of 2018.
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