The PD Partnership: A Care Partner’s Perspective

CaringDo you think of yourself or your loved one as a “caregiver” in life with Parkinson’s disease?

There are some people who identify with this term, but many others who do not, which is why when Rhona Johnson, a former member of PDF’s People with Parkinson’s Advisory Council (PPAC) coined the term “care partnership,” PDF thought it fit perfectly.

As Rhona says, it best describes the reciprocity between the person with Parkinson’s and the loved one. As a former care partner — her late husband, Bob lived with Parkinson’s — Rhona has great insight on this partnership.

As she notes, the relationship in Parkinson’s disease is a true partnership, because both people are both pushed to alter their lifestyles and adjust to the changing dynamics of the relationship.

johnson_rhona_2013With that in mind, how can you and your partner cope with Parkinson’s, while also maintaining your relationship and enjoying your lives to the fullest?

Here are a few of Rhona’s suggestions :

  • Don’t let Parkinson’s disease take over or define your lives. Be sure to maintain your individuality, and put your relationship as a couple first. The aim should always be to avoid becoming “identified by the disease.”
  • Talk openly to each other about PD. This is vital if you are to respect each other’s feelings. Discuss the impact PD has on each of you and how you want to handle it. Learn to listen.
  • Educate yourself (and others) about PD. Knowledge is power. Browse PDF’s website for free educational materials and resources. Contact our toll-free HelpLine at (800) 457-6676 or info@pdf.org. One of our specialists can help you find a local support group, which might provide a place to ask questions, express concerns, compare experiences and discuss medications.

Do you agree with these tips? Do you have others?

To see the full list of Rhona’s suggestions, click here.

Are you looking for other tips on caregiving or communicating with your partner in PD? First, browse PDF’s library of online seminars here, which includes several focused specifically on the care partnership and second, save the date for our upcoming webinar on Tuesday, November 10, entitled, Cognitive Issues in PD: Advice for Care Partners.

If you have additional questions about caring in Parkinson’s disease, contact the PDF HelpLine at (800) 457-6676 or info@pdf.org.

One thought on “The PD Partnership: A Care Partner’s Perspective

  1. Peggy Willocks

    Rhona was one of the first carepartners I met when I first took a position on the PPAC (Advisory Council). Traveling alone, I had to leave the restaurant where we had eaten a little early, and Rhona walked with me to the hotel. She was so good at predicting possible unsafe conditions as we walked, yet she allowed me to feel independent, something very important for both the person with Parkinson’s and the caregiver. “Carepartners” doesn’t mean the one without Parkinson’s only. It takes the two working together to providing for each other’s needs to be “partners.” Rhona writes, “Knowledge is power.”, but she has learned that applied knowledge is even more powerful, as well as essential to the partnership

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