March 13, 2019 10:00 am

When Life Gives You Parkinson’s podcast: Positive impacts of Parkinson’s

As the World Parkinson Congress approaches, one veteran of the event recommends packing light for the journey.

Ira Heuvelman-Dobroyluybova
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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. 

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After he was diagnosed with Parkinson’s, Tim Hague Sr. won the first season of The Amazing Race Canada and wrote a book called Perseverance: The Seven Skills You Need to Survive, Thrive and Accomplish More Than You Ever Imagined. In this episode, Hague and I chat about diagnosis, acceptance, finding balance, asking for help, building a community and why it is important for people with Parkinson’s to have the mindset of an athlete.

This will be Hague’s third World Parkinson Congress. He describes it as a fascinating opportunity.

“It is the only event of its kind for Parkinson’s where everybody associated with Parkinson’s shows up: researchers, docs, family, people with Parkinson’s and everything in between,” he says.

He likes it because of the unique perspectives on how this disease is treated, researched, attacked and responded to.

WATCH: Author Tim Hague Sr.’s story of perseverance

For first-timers, Hague suggests making a clear schedule, planning naps and breaks, picking enough stuff to get to and manage and leaving some flex time. Don’t feel like you need to do everything, he says. You can review the program online or download it here before landing in Kyoto. Also, Hague suggests you pack light; he plans to go to Kyoto for two weeks with all his clothes in a carry-on bag.

Hague explains how he plans to do that in the podcast. The WPC offers other tips in its online Travel Tool Kit.

READ MORE: When Life Gives You Parkinson’s podcast — Preparing for the World Parkinson Congress in Japan

Elaine Book is a social worker at the Pacific Parkinson’s Research Centre in Vancouver, B.C. She’s involved with the Care Partner Lounge and will be speaking at the WPC about the impacts of Parkinson’s on children in the house. Book admits that not all kids will have adjustment issues just because a parent is diagnosed with Parkinson’s but certainly some do. Some of the common feelings that children have experienced can be around shame, anxiety, sadness, fear, anger, grief, loneliness and self-consciousness because Parkinson’s disease has an unusual presentation at times. Additionally, Book notes there are a lot of positive impacts to recognize, too.

“Children might really develop improved coping skills. They can develop a sense of pride and maturity and empathy and compassion that they might not otherwise be able to be exposed to if there wasn’t a chronic illness in their home,” Book says.

READ MORE: When Life Gives You Parkinson’s podcast recap — Fatherhood and Parkinson’s

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 shares the phrase yoroshiku onegaishimasu, which can mean “please treat me in a favourable manner” or “How are you?” It’s used particularly in a first meeting or when asking someone for a favour.

You can listen to the pronunciation of this phrase by googling it online. A key thing to keep in mind when saying phrases in Japanese is to be sincere, speak slowly and be polite. Simply making the attempt to speak Japanese will be appreciated.

Heron also notes that business cards are quite an important tool in Japan, as the Japanese are more comfortable with formality and rituals. He suggests your business card is best if translated, with English on one side and Japanese on the other. He also recommends that cards are printed on good, quality card stock and that you take good care of your business cards, keep them clean and store them in a case. Heron describes the ritual of presenting the card, too.

“Take the card, have your name facing the other person, hold the card with two hands and extend the card with a slight bow. Hand it to the person with two hands and receive their card with two hands as well,” Heron says. “Once you receive the card, make a little bit of a show of actually reading it over and paying attention to it, showing you value it and respect it.”

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

For more information on the World Parkinson Congress, head to www.WPC2019.org

Facebook: Facebook.com/WorldPDCongress/

Twitter: @WorldPDCongress

YouTube: WorldPDcongress

Instagram: @worldpdcongress

Thank you to:

Tim Hauge Sr., author of Perseverance: The Seven Skills You Need to Survive, Thrive and Accomplish More Than You Ever Imagined

Elaine Book, social worker at the Pacific Parkinson’s Research Centre

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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