Notes from the Parkinson’s Care Partner Meetup – December 2022

december cpmu

During this month’s care partner meetup, we discussed setting up your physical and mental environment for success. While we don’t publish a recording of these monthly meetups because of the sensitive nature of the conversation, we do want to share some key takeaways so that even if you can’t join us live, you can still benefit from the expertise of our panelists and community members.

Show notes

  • Creating a safe space in your home is essential. You need to be able to escape the chaos of being a Parkinson’s care partner sometimes. Our panelists suggested having an armchair by a window with a nice blanket to create a peaceful oasis or getting yourself an exercise bike to take some time to yourself. Having a space that is dedicated solely to your relaxation and rejuvenation is a great coping mechanism and an easy way to reset.
  • Listen to yourself. Sometimes, especially when you devote so much time and energy to another person, you need to remember to give yourself the same level of care. If you feel burnt out, back off. Take time for yourself. Do that activity you’ve wanted to, even if your person with Parkinson’s can’t come with you. If they are safe and settled, they will be okay if you leave them alone for a bit. Treating yourself is important, even if it’s only one day of the year. 
  • Create a support system similar to the care team your person with Parkinson’s has. Have people you can turn to for different things, like someone who can help you take care of your partner when you need a break, someone you can vent to when needed, or someone you know is always down for a midday movie. Take time to go to the doctor for yourself, take time to get your hair done or do a workout, and take time to breathe. Having that support team will help you cope with your day-to-day struggles. We all need care teams, not just our people with Parkinson’s; yours will look a bit different.
  • Use the resources around you to help ground yourself. Connie recommended Esther Perel’s website to find affirmations, articles, and podcasts for inspiration. Podcasts are a great way to feel like you’re not alone and hear another perspective on what you may be going through. Articles and affirmations can provide that same support. These resources are also an excellent way to take that alone time we mentioned earlier. Having space and time to listen or read is vital for ensuring your mental health is at its best.
  • Play games and go out with your person with Parkinson’s. Parkinson’s sometimes makes us believe the worst, focus only on Parkinson’s, and stop having fun. All that does is create tension, resentment, and fear. So start having fun again. Gail recommends Uno, which she and her husband loved to play. Connie recommends cross-country skiing but does stress that Davis has a bit of an adaptation, so it’s okay if they separate while doing the activity. Pat does escape rooms. Samantha Narciso, our Content Program Associate, recommends going to the movies or a baseball game with your person with Parkinson’s, which is where she goes with her dad (Davis Phinney Foundation Ambassador, Joe Narciso) as much as she can. Making memories and having fun doesn’t have to stop with a Parkinson’s diagnosis.

Additional Resources

Enjoy this month’s care partner meetup?

Join us next month on Tuesday, January 4, at 12 pm MST. You can register here! 

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