A personal encounter with Parkinson’s Disease that led me to Laurie Sheridan

When I decided to create a podcast on caregiving, a number of friends suggested people I should interview or stories I should capture. As I reflect on why I interviewed Laurie Sheridan, it was, in part, because I heard that she was caring 24/7 for her husband, Ira, who has Parkinson’s Disease. I had known Laurie for many years through professional and personal connections, but we had lost touch. But my draw to Laurie was also influenced by my own experience as a friend to someone who ultimately died of the disease. Here is their story.

I first met my friend, Carrol, at the luscious, small farm in Vermont where she lived with her husband, Jon, and their two then-teenage sons. Carol was a clinical psychologist, and Jon did international development work. I was introduced to the two of them by Peter, this British guy I was dating at the time. He had lived on the farm with them for a couple of years, but had moved into his own little cottage, as he called it, where I would visit from Boston. Peter, that “guy I was dating”, and I have now been together for over thirty years.

I loved hanging out with Carrol and Jon. They were opinionated, smart and curious, always sharing insightful, funny stories of some misadventure. And their boys, both now theater artists, had absorbed the gift of storytelling, as they regaled us with tales of characters in their small town. Over the years, our relationship with Carrol and Jon and “the kids” grew.

Jon had been in the Peace Corps before he met Carrol. Fifteen years later, when the kids were grown, he and Carrol moved to Arusha, Tanzania for a couple of years. Carrol learned to speak Swahili, and she started counseling nationals and expatriates. She also worked as a consultant, trainer and grant maker for foundations and nonprofit organizations. Eventually, after a few years, the two of them returned to the states and resumed their lives in Vermont.

About 10 years ago, Carrol started having a lot of pain, accompanied by crippling anxiety. She saw western doctors and eastern practitioners, but no one could figure out what was going on. Her symptoms worsened, but she and Jon had decided to travel back with Jon to Tanzania, in the hopes of making it a long-term stay. When she arrived, her symptoms were so extreme that she had to be rushed back home. Carrol’s symptoms grew worse, her body alternately freezing up as if she were paralyzed, and then moving erratically and uncontrollably. When we took walks down their country road, she would careen off the path, but still refused a helping hand. Jon had slipped into becoming her 24/7 caregiver, but Carrol wanted to remain independent. That was tough. But Jon was devoted to her and stuck with her until the end.

I loved Carrol, and whenever we were all together, I spent a lot of one-on-one time with her. Her movements were out-of-control much of the time, and strangers would stare at her when we were out in public. But we would ignore them and continue our banter. That was one thing I loved about Carrol. She remained funny and kind, despite everything.

Eventually, Carrol was diagnosed with having “Atypical Parkinism”. Her symptoms didn’t align perfectly with the disease, but her doctors felt they were “Parkinson-like”. They started her on Parkinson’s medication to see if that might make a difference. And for a while it did. But over the next few years, Carrol’s health got worse. Winters were particularly challenging. So Jon moved them down to Sarasota, Florida, where there was a program called Parkinson’s Place, designed exclusively to meet the physical, social and emotional needs of people living with Parkinson’s. The program also provided support for their caregivers. Living in sunny Florida was decidedly a lot easier on Carrol’s health. Jon was consumed with being Carrol’s 24/7 caregiver. And their days were spent either at Parkinson’s Place or just hanging out, exploring Sarasota.

Peter and I visited Carrol and Jon during their winters in Sarasota, and in the summer, when they returned to Vermont. There was no question; Carrol was steadily declining. She suffered with terrible pain, and eventually with dementia and paranoia. The two of them had always loved to travel, but with Carrol mostly home-bound, Jon began to paint portraits, and this became his passion. Parkinson’s is a degenerative disease and can be brutal. Jon was learning that first-hand. After five years of living with the disease, Carrol died. At a memorial service for her, over a hundred friends gathered to share stories about Carrol’s humor, warmth and intelligence, and to recognize what a long haul it had been for her and for Jon, as well as for their two sons.

This experience of being with Carrol and Jon, and watching her disease take over their lives, was what drew me to talk with Laurie Sheridan. I heard through the grapevine that her husband, Ira, had Parkinson’s, and I wanted to reconnect with her to see how she was doing. Laurie never expected that she’d be spending her retirement years caring for Ira. And I hadn’t planned to interview Laurie for The Shape of Care. But I was deeply moved by her story, and by how Laurie talked about the experience of being a full-time caregiver.

In Episode 1, Laurie speaks with humor and honesty about how she has coped with Ira’s disease, and how it has taken over her life. Laurie is a storyteller, and I feel grateful that she was so open about her experience as a caregiver for Ira. If hearing her story brings up thoughts or questions, please email us at contact@theshapeofcare.org; or call us and leave a message at 617-600-8790.