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When Life Gives You Parkinson’s podcast: Sharing stories and searching for sleep

The most common sleep-related issue for people with Parkinson’s is sleep fragmentation.
The most common sleep-related issue for people with Parkinson’s is sleep fragmentation. Getty Images

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. 

In this episode of When Life Gives You Parkinson’s, we connect with Dr. Aleksandar Videnovic, a neurologist specializing in movement disorders and sleep medicine at Massachusetts General Hospital and Harvard Medical School. Videnovic will be speaking at WPC and hosting a roundtable focused on tips and tricks to managing sleep disorders in Parkinson’s. This link will take you to the full program schedule. The first tip Videnovic shares is to report poor sleep to your neurologist and general practitioner. He says sleep disorders are widely under-reported.

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READ MORE: When Life Gives You Parkinson’s: The Search for Sleep — A Virgin Voyage with Cannabis Oil

The most common issue for people with Parkinson’s is sleep fragmentation. It’s a Parkinson’s-specific insomnia that makes it difficult to stay asleep through the night. Videnovic preaches the importance of a good night’s sleep.

“We need sleep to reset our system. We need sleep to consolidate our memories, and even more recently, it has been discovered that sleep is the stage during which toxic metabolites get eliminated from our brain and from our nerve cells,” he explained.

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If that toxic waste is not expelled from our brain, Videnovic notes it can cause negative effects on a person’s performance, safety and alertness and exacerbate symptoms of Parkinson’s disease or keep Parkinson’s medications from working effectively.

READ MORE: Super Awesome Science Show: Disturbed Sleep

During each episode of the WPC 2019 podcast, I’m also 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 the culture so we can avoid embarrassing ourselves or offending our hosts. This episode, Heron explains that Japanese people deal in a lot of ambiguity. It is difficult at times to draw out opinions or get a definitive yes or no answer.

Culturally, Heron says this is tied to the important and fundamental Japanese concept of harmony or “wa.” The word wa is often used in the Japanese language to give a connotation of something’s Japanese-ness. For instance, washoku is Japanese food, and wafuku is Japanese clothing. You can Google the words to hear their proper pronunciation.

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READ MORE: Japan’s new imperial era will be called Reiwa, government announces

Lastly, April is Parkinson’s Awareness Month. One way you can help spread the word about Parkinson’s is to share your story with family, friends, colleagues, Facebook communities or local events sponsored by Parkinson’s support organizations.

If you’re not ready to share your own story, you can share this podcast. The more we tell our stories, the more awareness we generate around Parkinson’s and the easier it is to raise money for research that hopefully, one day, leads to a cure.

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:

The 12 WPC2019 Video Finalists

Dr. Aleksandar Videnovic, a neurologist specializing in movement disorders and sleep medicine at Massachusetts General Hospital and Harvard Medical School

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.

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When Life Gives You Parkinson’s was selected as one of Apple’s best podcasts of 2018

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  • Click the name of an episode from the list below to listen.
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