Extra Dosage: Dyskinesia
This is a special bonus episode of When Life Gives You Parkinson’s which we are calling “Extra Dosage.” Full episodes of Season 2 of the podcast will be released every other Wednesday beginning in September 2019.
If you were to imagine Michael J. Fox in your mind right now. You probably are picturing the guy from Back to the Future or The Good Wife. Think about when you’ve seen him interviewed on TVnews programs or when he testified before congress. Those uncontrolled, involuntary movements Michael J. 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 cause you to move uncontrollably. The Michael J. Fox Foundation describes it 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 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 jet lagged 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 and 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 5 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’ve 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 feel what to do anymore. It lasted 30 minutes.
In this Extra Dosage episode, I turn to friends and fellow people with Parkinson’s who’ve been dealing with dyskinesia longer than I have. Becca Miller, 45, is a psychologist at a community mental health center in New Haven, Connecticut. She was diagnosed with Parkinson’s disease six years ago. She 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. I wanted 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, the Michael J. Fox Foundation (MJFF) has announced a series of free, daylong, live events called “Parkinson’s IQ + You.” MJFF Deputy CEO Sohini Chowdhury joined the podcast to chat about it, “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.”
The “Parkinson’s IQ + You” series 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 get more information at www.michaeljfox.org/PDIQ.
There are other events I will be attending in the coming months that were mentioned in this episode.
Saturday, August 15, 2019 – Join me at Tour de Fox Pacific Northwest in Port Coquitlam, British Columbia. Details here: https://tourdefox.michaeljfox.org/pacificnorthwest
Saturday, August 24, 2019 – Join me inin 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 cause. Race details here: You can also donate to the When Life Gives You Parkinson’s Team here:
Sunday, September 8, 2019 – I am the emcee and a walker for the Parkinson Superwalkin Vancouver. Society of British Columbia. Funds raised in BC through this event help to provide valuable support services and education offered by Parkinson Society British Columbia in BC as well as fund research efforts. You can also donate to the When Life Gives You Parkinson’s Team here.
Saturday, September 14, 2019 – I will be in Atlanta, Georgia 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: [email protected]
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Special thanks to…
Becca Miller, Jim Smerdon, Emma Lane, Sohini Chowdury, Rebecca Gifford and Henry Gifford.
Dila Velazquez – Story Producer
Rob Johnston – Senior Audio Producer