Living Intentionally
Heather Butchen
Heather and her husband, Jeff, have been living with Parkinson’ s since 2013.
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My top care partner life hack is this: Don’ t feel guilty about taking time for yourself. It’ s not selfish. Exercise, go meet a friend, take a walk— whatever you think will reset you. Even an hour to yourself can make a huge difference.
My husband, Jeff, was diagnosed with Parkinson’ s when he was 51. We started our support group in 2014, a year after Jeff’ s diagnosis. Speaking with others in real time about shared experiences has been invaluable. We exchange information on doctors, treatments and day-to-day challenges. No matter the topic— constipation, medical side effects, emotional ups and downs— there are always people or resources to guide you. I also lean on my kids, especially my daughter Zoe, who works at The Michael J. Fox Foundation. You can read Zoe’ s story on page 27.
I also subscribe to newsletters and webinars from organizations like MJFF. When a topic like deep brain stimulation or nutrition becomes relevant, I revisit saved articles. Local programs have also helped. I still wish I had more connections with people in the same exact situation. It’ s kind of like becoming a new parent; you want to meet others who are right there with you, going through exactly what you are.
We’ re starting to plan for things like needing a one-floor home, maybe hiring a driver and maybe being in warmer climates for long periods of time. His deep brain stimulation surgery in March 2024 gave us a reset, but we’ re staying mindful of future needs. Caring for someone with Parkinson’ s is a job, like any other. There are responsibilities, emotional labor and practical demands. It’ s about managing my husband’ s Parkinson’ s journey from beginning to end.
Jeff’ s diagnosis has made us live more intentionally. We’ ve traveled, made memories and done things we might have put off. On the other hand, our partnership has changed. I care for him more than he does for me. We used to be 50 / 50 in everything, including running the business we own together. Now, the dynamic has shifted. I am more of a caretaker. And that transition has been emotionally complex for both of us.
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