Written by Connie Carpenter Phinney, cofounder of the Davis Phinney Foundation and a care partner since 2000. 

Our December 2024 meetup featured Kathleen Crist, a true friend of all people with Parkinson’s and their care partners. Kathleen is the executive director of the Houston Area Parkinson’s Association, and she has been working with people with Parkinson’s for almost 24 years in her current role and before that as a licensed social worker. Kathleen is also a family caregiver, first for her grandmother, and now for her mother.  

The meetup also featured our regular panelists, Gail Gitin and Pat Donahoo. As usual, Polly Dawkins, Executive Director of the Davis Phinney Foundation, moderated the conversation.

If you haven't already signed up to attend our sessions live, you can do so today.

As usual we started our live call with a breathing practice. As a former elite endurance athlete, I have long known the power of the breath, and I invite you to work on taking "breath breaks" to help in regulating your emotions and help you find equilibrium during stressful times.  

Box breathing is something that the Navy Seals use—so why not us? It’s a simple self-care technique that involves inhaling for four counts, holding your breath for four counts, letting it out slowly for four counts, and holding it again at the bottom of your breath. Do this several times in succession to regain a sense of calm when you feel anxious and overly stressed. It is simple, and it helps!  

BALANCe, RENEGOTIATION, and when it's about the care partner

After the breathing exercise, Pat started off our conversation by sharing his experience downsizing in his job as a middle school teacher because his wife, Cydney, needs him to be more present. Anxiety is a big part of Parkinson’s for many people, and Cydney does better when they are closer together, so Pat is currently trying to create a work environment where his wife won’t be left home alone.  

Kathleen commented that finding a balance is often challenging as you figure out your own needs as a care partner while managing the needs of the person you're caring for. This is especially important if you love what you do and don’t want to fully give it up.  

Pat said, “I see light in the opportunities,” and while he plans to quasi-retire, he isn’t ready to stop working altogether. This is where he is working to find the balance. Cydney was 47 when she was diagnosed, and she retired quickly from her work. Because of this, they missed out on some of the potential for earnings which is something people in the young onset Parkinson’s world understand. 

Pat also talked about how his wife had knee surgery recently. While recovering, she took a little spin on her recumbent bike in their cul-de-sac. He said his neighbors came out to applaud her efforts which made her throw her arms up in victory. We discussed how important small victories are and how bringing the neighbors in helps to build community and more understanding. Pat was happy for this victory, but he also said, somewhat jokingly, “It’s not about me.” 

This prompted a question for Kathleen: “When is it about the care partner?” Her answer was swift and to the point: At the point of diagnosis.  

Kathleen explained how care partners can't help but be affected when someone they love is diagnosed with a chronic illness. In fact, the impacts probably start even before diagnos