Episode Details

In this episode of The Art of Imperfect Adulting, Amy Stone speaks with Terri Pease about the emotional realities, challenges, and unexpected joys of loving someone with Parkinson’s disease. Joining the conversation from Yarmouth, Maine, Terri opens up about her late-in-life marriage, building a life with her husband while navigating the relentless progression of Parkinson’s, and how caregiving transformed her understanding of love, loss, and support. Listeners will hear how Terri found unexpected strength, candid reflections on relationships changed by illness, and practical wisdom on sustaining dignity.

Terri Pease PhD worked in academics, social services and health care all her professional life. When Terri married her husband who had Parkinson's Disease, she brought her wealth of knowledge and experience to bear on caring for him. That professional experience has informed her approach to caregiving, and to encouraging Parkinson's caregivers to make the idea of self-care real, practical and possible. As the author of Love, Dignity, and Parkinson’s: from Care Partner to Caregiver she has become the online voice for the more than 60,000 new Parkinson’s spousal caregivers who each year start on this long and challenging path.

Main Topics Covered:

1. Understanding the unpredictable journey of Parkinson’s disease and its impact on both the diagnosed and loved ones.
2. Navigating the isolation and emotional overwhelm often experienced by Parkinson’s caregivers, especially partners and spouses.
3. The importance of community, connection, and finding “enough similarity” in shared experiences, even amidst unique circumstances.
4. Maintaining dignity for both the person with Parkinson’s and the caregiver—and why this is central to long-term caregiving relationships.
5. The complex emotions of loss, frustration, and grief as a partner’s capabilities and personality change over time.
6. Coping with changes in intimacy, partnership, and reciprocal support within a marriage affected by neurodegenerative illness.
7. Why communities and support systems often fall short—and creative ways caregivers can find connection and help.
8. Lessons learned on acceptance, letting go, and being present through the end of life.

Quote from the Episode: “When I was able to say to myself, he has nothing for you, that meant I could stop looking for him to be the husband that I had married…and when that happened, I was able to think differently about what is happening here. What are we here?” — Terri Pease

Timestamps: [00:00:07] Welcome & intros; Terri’s home in Yarmouth, Maine; opera as shared art and connection

[00:01:27] Introducing the day’s topic: Loving someone with Parkinson’s disease

[00:02:48] Terri shares how she met her husband and the early awareness of his Parkinson’s diagnosis

[00:03:24] What Terri knew (and didn’t know) about Parkinson’s at the start

[00:04:11] Explaining Parkinson’s disease for those unfamiliar—its unpredictable, individualized course

[00:05:20] How Parkinson’s impacts emotions, personality, and behavior, not just mobility

[00:06:18] The gap between common perceptions and caregivers’ lived experiences

[00:08:02] The role of loneliness and why peer caregiver support is so powerful

[00:10:29] Comparing caregiving to early parenthood—the similarities an