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

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.

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.

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.

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?

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?

“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.

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