Text Size Text Size:

Living Well with REM Sleep Behavior Disorder

living-well-with-rem-sleep-behavior-disorder

Living Well with REM Sleep Behavior Disorder

RBD Infographic
click to enlarge

 Written by Kelsey Phinney, BS Neuroscience, Middlebury College, 2016

Research inspired by real-life

When I came home from college, my parents sat down to tell me that they had gotten separate beds.

I was uncomfortable finding out about this and I immediately jumped to the conclusion that this was a sign of failure. It took a long talk for me to understand that this was actually a sign of the strength of my parent’s marriage and their ability to talk openly about the best ways to live with my dad’s Parkinson’s.

My dad has lived with Parkinson’s for as long as I can remember.

We are very open about his motor and non-motor symptoms, so I knew that he had rapid eye movement sleep behavior disorder (RBD). In fact, my parents had told me about a vivid nightmare my dad experienced when I was in high school in which he had to run across the house to protect me from a giant snake that was hiding under my bed.

But he didn’t remain in the dream – he literally jumped out of bed and woke up on the floor. My mom woke up to the sound of him falling off of the bed and hitting the floor. I knew it was dangerous for them and had an impact on their quality of sleep, but I hadn’t thought about his RBD since going away to college.

After discussing their decision to get separate beds, I realized that if I was uncomfortable with this topic, it must be worth looking more into.

I wanted to know more about it, from research to real-life stories, so we can all better understand RBD.

Listen to Kelsey’s Podcast

In her podcast below, Kelsey interviews Dr. Benzi Kluger of the University of Colorado and care partner expert, Connie Carpenter-Phinney, to help you learn more and live well with RBD.

How do I better manage RBD?

Learn more about RBD, including information to help you and your partner manage the effects of RBD.
Learn more about RBD and management tips

Sleep and Parkinson’s 

Parkinson’s can affect sleep in many different ways, including trouble falling or staying asleep, vivid dreams, waking up frequently during the night and excessive sleepiness during the day.
Learn more about how Parkinson’s can affect sleep and what you can do to sleep better.


phinneys_20090801_140Kelsey Phinney’s dad, Davis Phinney, was diagnosed with Parkinson’s when she was five years old and she has been interested in learning more about the brain and ways to help people living with Parkinson’s ever since. Kelsey graduated from Middlebury College in May of 2016 with a degree in neuroscience and is currently cross country skiing professionally in Sun Valley, Idaho. Learn more about Kelsey at www.kelseyphinney.com.

10 Comments on “Living Well with REM Sleep Behavior Disorder

    • Diane Daignault

      November 3, 2016 at 11:28 am Reply

      Thank you for the information on RBD. I am looking forward to other blogs.
      As a patient, I enjoy reading research on PD, but sometimes it is difficult to understand. Is it possible to have medical terms as a blog?
      Thanks

      • Megan Boyles

        December 14, 2016 at 1:41 pm Reply

        Hi Diane – this is a great recommendation that we are working toward. In the meantime, feel free to email [email protected] should you have more questions. Thank you so much for your feedback.

    • Michelle Heath

      November 3, 2016 at 4:45 pm Reply

      Thank you for a frank and informative talk about this odd and potentially difficult symptom of Parkinson’s. Davis Phinney was THE inspiration for my husband to receive the life changing DBS surgery after 9 years of living with PD. Andy also has the REM sleep disorder. We have also gone to separate beds with a small space between and that has helped enormously. There is a lot of loss for the family (we have 2 adult kids) and care partners of one with Parkinson’s and your podcast helps us all to feel more connected and hopeful about life with this disease. Thank you.

      • Megan Boyles

        December 14, 2016 at 1:52 pm Reply

        Hi Michelle – Thank you for sharing your feedback. To learn more about sleep, please visit our sleep page for more information. Feel free to email us at [email protected] should you have more questions.

    • Linda Morgan

      November 14, 2016 at 8:38 pm Reply

      I have had PD and RBD for10+ years. Thank you for your honesty! Right before my DBS ,I moved into another bed mainly because I fell and broke a rib. It was less painful if I could sleep on a different side of bed. Then post-surgery I went to another bed to heal. When I came back my spouse went to another room! ( I guess he had a taste of a good night’s sleep!) But until now,I have not thought to discuss with our two boys,30 &27 yrs . Kelsey, I thought you did a great podcast,your voice is very “NPRish” and very natural. I plan to dicuss our decision with each son over the Holidays , next I see them. Linda Please tell yor Dad Hi! for me, I first met him in Charlotte at a VS with Polly.

      • Megan Boyles

        December 14, 2016 at 1:50 pm Reply

        Linda – Thank you for sharing your feedback with us. Make sure to check back on our blog page for more posts from Kelsey and others. Please email us should you have additional questions at [email protected].

    • Emanuel Albergaria

      February 6, 2017 at 9:13 pm Reply

      I have parkinson and i will send my comment later

      • Scout Hill

        February 16, 2017 at 12:30 pm Reply

        Hi Emanuel – thank you for sharing your feedback. To learn more about REM and sleeping, please visit our “sleep” page for more information. Feel free to email us at [email protected] should you have more questions.

    • Gina Maranto

      May 24, 2017 at 7:13 pm Reply

      Thanks so much, Kelsey, for this important podcast. My husband Mark has had Parkinson’s since he was 52–in fact, he was diagnosed around the same time as your father, and spoke with Davis due to a mutual friend in Boulder. I have never heard of RBD until today–and we both consider ourselves highly informed. Mark has also had DBS.

      I now realize that Mark has had RBD for at least 20 years, and the sorts of episodes that your mother has described are quite familiar. He has on a number of occasions come close to hurting me, and once punched me quite hard.

      He has now gone on to time-release carbodopa-levodopa and it seems to help with his sleep. He also sleeps in another bed when he has sleep disruption; but the other night, he fell out of bed and hurt himself. So it might be time for a bed that helps protect him.

      • Alex Reinhardt

        June 13, 2017 at 1:26 pm Reply

        Thanks for sharing, Gina! We are glad Mark has seen some improvement with the medication. You are both doing a great job of continuously evaluating your needs and seeking out ways to improve both of your sleep experiences. We hope you have found the right type of bed; we’d love to hear your experience in finding a bed that assists in people dealing with RBD.

Leave a Comment About This Blog Post Below
OR
Share Your Story Here »

Your email address will not be published. Required fields are marked *

You may use these <abbr title="HyperText Markup Language">HTML</abbr> tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>

*

*Your comment will be published on our website. If you have a private question or comment, please email [email protected].