In June, I will be travelling to Kyoto, Japan for the fifth World Parkinson Congress (WPC). WPC is a global Parkinson’s event that opens its doors to all members of the Parkinson’s community, from neurologists and researchers to those living with the disease. Since my diagnosis in August 2017, I’ve launched the podcast When Life Gives You Parkinson’s. As an extension of that podcast, I have teamed up with the World Parkinson Coalition to help preview WPC 2019.
At the World Parkinson Congress, there will be many sessions, workshops and roundtables focused on issues unique to people with Young Onset Parkinson’s Disease (YOPD). A person is typically diagnosed with Parkinson’s at the age of 60. If you are diagnosed under the age of 50, you are considered YOPD. Reports vary, but the Michael J. Fox Foundation says somewhere around 10 per cent of Parkinson’s patients fall into this category.
In this episode of When Life Gives You Parkinson’s, fellow YOPD patients Emma Lawton and Rebecca Miller share their experiences living with the disease and offer tips around finding happiness, parenting and working with Parkinson’s. Emma was diagnosed at the age of 29. Rebecca’s symptoms began when she was 29, but went undiagnosed for 10 years. Both will be speaking at WPC2019.
Three months after her diagnosis in 2013, Lawton suddenly stopped going out and doing anything because she didn’t know how to talk about it.
“I was making my life worse by letting Parkinson’s make me feel the way I was letting it feel,” said Lawton. “I was actually letting it win, and it was stopping me from going out and doing stuff.”
Upon reflection, Lawton believes she gave in too easily at the beginning and now realizes she’s in control of her life, her happiness and how she deals with Parkinson’s. In January, in an effort to make up for lost days of happiness, she started seeking daily adventures through her “F—it List.”
Every day of 2019, Lawton is trying a new activity. She’s already been to a gun range, learned how to arrange flowers and was shown how to be a crime scene investigator. The adventures are documented on YouTube and her website.
“I’m kind of hoping, at the end of it, to have something which shows me as a person, what makes me happy but also, along the route, might kind of inspire others to try and take control of their own happiness. Having something that makes me work on my own happiness and work my own well-being is actually really important to me,” she said.
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Rebecca Miller has earned her PhD and is an assistant professor in the psychology department of the Yale School of Medicine and the single mother of a kindergartener. She is trying to juggle all of that with the progressing symptoms of Parkinson’s.
“I really worried that I would have to stop working and that I wouldn’t be able to do my job. Ironically, it’s sort of, actually, in some ways — at least for now — propelled me further in my career.”
Prior to Parkinson’s, Miller’s goals didn’t include working her way along the faculty track. Now, she is working towards a promotion to associate professor and writing more than she ever has.
How does she balance it all?
“Oh, I think maybe the idea of a balance is a myth,” she said. “I guess I do my best to do the juggle so it’s really about staying flexible, accepting help, asking for help 0151 that is a real challenge for me.”
Miller also focuses on prioritizing activities.
“I know that I may not have so much energy during the day and at certain times of day,” she explained.
In those moments, Miller says there is a decision to make: “What’s more important — going on my daughter’s field trip or working today? And just thinking, ‘You know what? She’s never going to be in kindergarten again.’”
Miller, like many parents with Parkinson’s, feels guilty about not being able to always do the things her daughter wants her to do. She is beginning to chat about Parkinson’s with her five-year-old but just the very basics as she tries to match the conversation with where her child is developmentally, using language she understands and reassuring her every step of the way.
On each episode of the WPC 2019 podcast, I’m going to check in with James Heron, executive director of the Japanese Canadian Cultural Centre, to teach us a new word or phrase and help us better understand Japanese culture so we can avoid embarrassing ourselves or offending our hosts. This episode, Heron teaches us the phrase nihon-go ga hanase masen, which means, “I can’t speak Japanese.”
For more info on the World Parkinson Congress head to www.WPC2019.org.
Facebook: Facebook.com/WorldPDCongress/
Twitter: @WorldPDCongress
YouTube: WorldPDcongress
Instagram: @worldpdcongress
Thank you to:
Emma Lawton, whose adventures can be found at https://www.thef—itlist.com/, on YouTube and on Twitter
Rebecca Miller, PhD assistant professor in the psychology department of the Yale School of Medicine
James Heron, executive director of the Japanese Canadian Cultural Centre
If you have a comment or question about the podcast, you can email us at parkinsonspod@curiouscast.ca.
When Life Gives You Parkinson’s was selected as one of Apple’s best podcasts of 2018.
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