My experience attending an event for Parkinson’s care partners
The program offered valuable opportunities for education and connection
It was a cold, gray, rainy Saturday in Cleveland. My husband, Arman, and I would typically spend this kind of day relaxing at home, reading, renting a movie, or binge-watching a series while I fold laundry. But this day was different. I’d signed up for the Cleveland Clinic’s annual Care Partner U event, created for friends, family members, and care partners of those with Parkinson’s disease.
Leaving the house wasn’t easy, as my husband was unsure about joining me. The last time I participated in the event, I realized that other care partners had brought their spouse or Parkinson’s patient with them, as the program offered activities for people with the disease. But Arman decided to stay home on such a cold and rainy day, so off I went on my own.
As I drove across town to the hotel ballroom, I naturally worried about him being alone for more than six hours. I typically leave for much shorter increments of time, such as when I go to a Pilates class or play mahjong with friends. However, I felt that attending this important event would benefit both of us, and I decided it was worth my time. I left Arman with easily accessible snacks and lunch and hoped for the best.
When I entered the hotel, a long line of people were waiting to check in. I immediately realized that the stress of the crowd and waiting in line might have heightened my anxiety if Arman were with me, so I was glad he was safe in the comfort of our home.
When I attend similar events, I always look for someone close to my age (mid-50s). When we began this journey, I wasn’t even 40 years old, and most people were much older. Even now, I still feel like a small child in a large pool of spouses who are at least 10-20 years my senior. I don’t mind being the youngest in the crowd, but it’s not always easy to connect with others whose experiences have been vastly different from mine. So I found a seat in the last row and began listening to the speakers.
The first session I attended was called “Navigating Hospital Care: Addressing the Unique Safety Needs of People with Parkinson’s.” I was thrilled to learn about a Cleveland Clinic inpatient program for people with Parkinson’s. A dedicated team at the hospital manages these patients, with the goal of reducing complications, medication and timing errors, delirium, and other issues that can arise during patients’ stay. I hope other hospitals adopt a similar program if they haven’t already done so.
“Relationship Changes and Connections” was the next session on my schedule. The speaker discussed how roles can shift after a diagnosis, and this change in relationship dynamics can trigger grief for some patients and care partners.
She encouraged us to look for symmetry in the imbalance and try to hold the heaviness together, emphasizing that this kind of emotional response is both natural and valid. Being intentional about developing good communication and connection is key to keeping a relationship strong through the hard times. It’s also essential to accept the diagnosis and adapt.
Connecting with other care partners
After the morning sessions wrapped up, I walked to where lunch was being served, noting that many other attendees seemed to know each other. It felt like walking into the lunch room in middle school, not having a group of friends to sit with.
I noted a woman seated at a table alone, and I walked over and sat beside her. Several others joined us, and sure enough, they didn’t know anyone, either. We all got to talking about our unique experiences with our spouses and Parkinson’s disease. Since I was, of course, the youngest at the table, and my husband had been diagnosed for the longest, they decided that I should have the dessert tray right in front of me as a reward.
It was a special experience to meet these incredible women at my table who dedicate their lives to their spouses. (Only a few male care partners attended, perhaps because men are much more likely to have Parkinson’s.) I got the phone number of the woman I sat next to, and I plan on contacting her soon.
The afternoon sessions went by quickly, and soon, it was time for me to head home on the rainy highway. Surrounded by the amazing care partners in that hotel ballroom, I felt a strong sense of community. I gained tremendous knowledge from the sessions and the presenters, who passionately dedicate their careers to helping families like mine.
If you have the opportunity to take part in a similar event, please do so. Even if it’s virtual, it’s definitely worth your time.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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