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Advice for Parkinson’s Care Partners with Connie Carpenter Phinney

[The Parkinson's Podcast™]

Advice for Parkinson’s Care Partners with Connie Carpenter Phinney



advice-for-parkinsons-care-partners-with-connie-carpenter-phinney



Kelsey Phinney talks to Her Mom, Connie Carpenter Phinney, about Being a Parkinson’s Care Partner for Over 18 Years

Every obstacle presents an opportunity.
– Connie Carpenter Phinney

Parkinson’s impacts the whole family, especially those most involved in the day-to-day care of the person living with Parkinson’s. As a care partner, it can be easy to lose sight of your own health and well-being as you care for your loved one. However, taking the time to prioritize your own physical and emotional health will not only ensure that you have the stamina and bandwidth to care for your loved one, but the joy you get from taking care of yourself and minding your own needs will make a big difference in their life as well.

In this episode, Conne Carpenter Phinney shares her journey as a care partner to her husband, Davis Phinney, and the practical strategies she uses on a daily basis to stay healthy, connected and present.

Notes

  • It can take a year or longer to adjust to a Parkinson’s diagnosis and live with it
  • It’s important to teach your person with Parkinson’s to accept help from other people
  • Commit to continued dialogue about your experience and frustrations 
  • Acknowledge that you hate Parkinson’s, too
  • Be sure not to confuse hating Parkinson’s with how you feel about the person with Parkinson’s
  • Create a safe environment in which to live – move or remodel if you can
  • If your person with Parkinson’s has REM Sleep Behavior Disorder, consider getting separate beds
  • Accept the roller coaster that is Parkinson’s and that there will be good days and bad days
  • When you have bad days, ask yourselves, “How did we get here?” (consider sleep, medication, food, exercise)
  • Always go to doctor’s appointments with your person with Parkinson’s. Record the conversation and be sure to go over what the doctor said when you get home
  • Take care of your marriage and keep honesty, humor and playfulness a priority
  • Avoid the temptation to feel sorry for yourselves
  • Every obstacle presents an opportunity

Concepts Mentioned in this Podcast & Further Reading

Rewriting the Rulebook for Parkinson’s Care Partners
The Big 16: What to Say (And What Not to Say) to Someone Who Has Parkinson’s
The Parkinson’s Care Partner’s Digital Toolbox
How to Be the Parkinson’s Care Partner Your Partner Needs
How to Stay Healthy and Avoid Burnout as a Parkinson’s Care Partner
Care Partner Videos with Connie Carpenter Phinney
Living Well with REM Sleep Behavior Disorder
Parkinson’s Home Safety Checklist
Why Do I Need an Occupational Therapist?
An OT’s Simple Strategies for Living Well with Parkinson’s

 

Connie Carpenter Phinney is an entrepreneur, author, artist, lifelong athlete, Parkinson’s advocate and Board Chair for the Davis Phinney Foundation. Connie particularly enjoys sharing her experiences via the written word and she is an eloquent and humorous public speaker. She has two adult children, Taylor and Kelsey, with her husband Davis Phinney.

 

 

 

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15 Comments on “Advice for Parkinson’s Care Partners with Connie Carpenter Phinney

    • Stephen Wolfraim

      October 24, 2018 at 4:18 pm Reply

      Once again, this podcast a pleasure to listen to. As a person with Parkinson’s for some 11 plus years, I take delight in listening to your always grounded responses/comments/suggestions that help us work towards that balance and capability to live”well” while still acknowledging and accepting
      the ups and downs.

      • Melani Dizon

        October 25, 2018 at 5:40 am Reply

        Thank you for tuning in, Stephen. We’re glad you’re enjoying it.

    • Debbie

      October 24, 2018 at 5:20 pm Reply

      Very interesting
      Thank you

    • carole ranen

      October 24, 2018 at 6:17 pm Reply

      Thank you for your honesty and observations about living with Parkinsons. My partner of 30 years passed away in December of 2017. He was diagnosed in 2012. We shared a a beautiful and active life and I miss his, intelligence, humor and emotionally healthy way of dealing with the disease.
      We had a great supportive medical team at the U of Minnesota and could call for advice and always get a quick response. Went to your Victory Summit soon after his diagnosis. It was a very positive experience. Nothing easy about the disease and the gradual loss of the life you once had. Thanks for the podcast.

      • Melani Dizon

        October 25, 2018 at 5:39 am Reply

        Thank you for listening, Carole. I’m so sorry about your partner. I’m glad you enjoyed The Victory Summit event and it was a positive experience for you both. We wish you the best as you adjust to this new chapter of life without your longtime partner.

    • Susan Godin

      October 26, 2018 at 11:45 am Reply

      Thank you for everything you do to help people dealing with Parkinson’s. I am a caregiver and benefit greatly from your support.

      • Melani Dizon

        October 26, 2018 at 11:57 am Reply

        Thank you for listening, Susan. We’re glad you’re getting value from our work. Keep an eye out for a new live, online course we’re offering especially for Parkinson’s care partners like you.

    • wayne a. Gilbert

      October 26, 2018 at 7:37 pm Reply

      I’ve tried to find lots of info and inspiration to help my care-partner. this is the best yet. hearing the love in both voices adds richness and texture to the ideas. thanks.

      • Melani Dizon

        October 29, 2018 at 8:45 am Reply

        Thank you, Wayne. We’re so glad you enjoyed it.

    • Ann A.

      October 26, 2018 at 8:38 pm Reply

      Thank you so much for this podcast and for other training and materials the foundation provides. My husband was first diagnosed about seven months ago and has yet to “come out” with his diagnosis. This kind of information is a lifeline!!!

      • Melani Dizon

        October 29, 2018 at 8:49 am Reply

        Hi Ann – Thanks for listening. We know how difficult it is in the beginning and in deciding with whom you want to share the news. We’re glad you have found our materials valuable. Our community is so wonderful. If you or your husband have any questions or would like some support during this transition period, please reach out to one of our Ambassadors. They have so much valuable information, insight and experience to share. You can learn about them and find out how to contact them here: https://www.davisphinneyfoundation.org/resources/ambassadors-2.

    • Pat Donahoo

      October 27, 2018 at 10:41 pm Reply

      I can never get enough of Connie’s wisdom and insight to the task of being a Care Partner. Being a partner with your person with Parkinson’s is so much more than giving care and Connie lays it out in simple understanding steps. Thank you, Connie, Kelsey, and the Davis Phinney Foundation for bringing caring with our partners to the forefront.

      • Melani Dizon

        October 29, 2018 at 8:51 am Reply

        Thanks for listening, Pat. Connie has so much insight and experience to share. We know how important care partners like you are to the Parkinson’s journey, so we love to highlight their stories and offer inspiration to others traveling a similar path.

    • Steven Yule

      November 5, 2018 at 2:57 pm Reply

      Hi, great casts thanks.
      I’m 51 now, diagnosis of PD for 3 years but realistically about 6 yrs. Married for 28 years, great wife with 3 great kids
      Interested in your thoughts on retirement , cognitive issues (I don’t think I’m demented), driving, and this little problem that drives me nuts of tuning in bed, any advice on beds to hold on to or other solutions ?
      Thanks again
      Steve Yule
      Consultant Radiologist
      Aberdeen UK

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