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When Life Gives You Parkinson’s podcast: The elephant in the bedroom

By acknowledging Parkinson’s has changed how we sleep, connect, and show affection for each other, we are learning to look the PD elephant in the eye.
By acknowledging Parkinson’s has changed how we sleep, connect, and show affection for each other, we are learning to look the PD elephant in the eye. Getty Images

This week’s post was written by Rebecca Gifford, the wife of Larry Gifford.

In this episode of When Life Gives You Parkinson’s, Larry and I explore how we keep the magic alive in the bedroom and beyond when there is always an elephant (a.k.a Parkinson’s disease) in there with us, eating peanuts and taking up a lot of space.

Your bed. It’s your private space. It’s restful, probably even peaceful sometimes, and hopefully happy. It can be a safe place to feel and even grieve. If you’re fortunate enough to have someone to share it with, it’s a place for communication, intimacy and excitement.

Larry and I have our most important conversations in bed. Since he was diagnosed with Parkinson’s these conversations happen regularly.

We talk, share triumphs of the day — sometimes big successes and sometimes simply a hilarious moment with our son.

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We complain, cry, say things we probably shouldn’t, unconsciously avoid saying some things we probably should. Sometimes we have sex, but we’ll talk about that a lot more in this week’s podcast.

And we sleep.

Larry Gifford on living with Parkinson’s
Larry Gifford on living with Parkinson’s

All the things that happen in our bed are the most important things for our relationship, and for our well-being. It makes sense to pay attention to it.

That’s why Larry and I sought advice from nurse and sex health educator, Maureen McGrath.

“This is new for you, Parkinson’s disease, and it is different for every patient,” she said.

McGrath told us 70 to 80 per cent of the couples she counsels are also dealing with medical conditions that impact intimacy in their relationship. We had a lot of questions.

READ MORE: ‘Dead bedroom’: Stress and other factors ruining your sex life

Do we have a bedroom that is conducive to sleep and wellness?

“Sleep is critical.” McGrath said, “Make sure you don’t have a television in your room, or an iPad or bring a phone to bed. Dedicate your room to sleeping and/or sex.”

Have we created a space that is as safe and nurturing as it was before Parkinson’s entered our life?

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McGrath suggested, “Make your room an oasis.” We made plans to use our aromatherapy diffuser more frequently and make sure our bed is plush and comfortable for us both.

Are we still affectionate with each other, even though nothing is as effortless as it used to be?

READ MORE: Why some people have sex even when they aren’t in the mood

“You have a need to be close, you have sexual desire, but you may have a little bit of fear around it,” she said. McGrath recommended not overthinking it, returning to what you know and making it a priority appointment in our life.

By acknowledging Parkinson’s has changed how we sleep, connect, and show affection for each other, we are learning to look the PD elephant in the eye, smile at it and thrive on all levels — including in bed.

Thank you for listening. Add your voice to the show and leave a message for us here.

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmeyer

Twitter: @Niki_Reitmayer

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Thank you to:

Deana Grinnell

Maureen McGrath, Nurse and Sexual Health Educator. Her website is backtothebedroom.ca.
Follow her on twitter @back2thebedroom. Check out her Ted X Stanley Park talk “No Sex Marriage – Masturbation, Loneliness, Cheating and Shame”

Gila Bronner, founder and former director of the Sex Therapy Service at Sheba Medical Center in Israel

Rebecca Gifford, my amazing wife.

Henry Gifford, Captain Awesome (Our son).

For more info on our presenting partner, Parkinson Canada, head to parkinson.ca

The toll free hotline: 1-800-565-3000

Or follow them on Twitter at @ParkinsonCanada

Thanks also to our content and promotional partners

Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.

We LOVE that you are loving the “When Life Gives You Parkinson’s” podcast! If you haven’t subscribed yet — what are you waiting for? 

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Subscribing’s easy! Here’s how…

On your iPad or iPhone:

  • Open the Apple Podcasts app, search for When Life Gives You Parkinson’s and select it from the list of results.
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  • Click the name of an episode from the list below to listen.

On your Android Phone or Tablet:

  • Open the Google Podcasts app, search for When Life Gives You Parkinson’s and select it from the list of results.
  • Once on the When Life Gives You Parkinson’s page, click the “Follow” button to have new episodes sent to your mobile device for free.
  • Click the name of an episode from the list below to listen.
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