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Lynn Johnson was a busy mother of two and a senior project manager when she was diagnosed with early-onset Parkinson’s disease in her 40s. She didn’t tell anyone at her company about her neurological condition because she was concerned about keeping her job. Johnson had few physical Parkinson’s symptoms but she struggled with cognitive effects. It started taking her much longer to analyze data or write simple emails. Prioritizing and multi-tasking became difficult. Parkinson’s also affected Johnson’s sleep. On a good night she slept only four to five hours. She was often so fatigued she didn't have the energy to exercise despite knowing that it can slow the progression of Parkinson’s.
Not knowing anyone with early-onset Parkinson’s disease, Johnson was interested in finding people like her. She attended support groups but the first groups she found were mostly made up of elderly men – no surprise given that Parkinson’s affects men much more often than women and is typically diagnosed after the age of 60. “They were people who could have been my father or grandfather. Many of them were in wheelchairs and that scared me,” she says. Then in 2021, she saw a flyer in her neurologist’s office for a study that offered free vocational rehabilitation counseling for people with Parkinson’s. She decided to give it a try.
Johnson is now a veteran member of the Parkinson’s Works group, a support group for people with Parkinson’s disease who want to discuss employment-related issues. The group is run by Shirley Ryan AbilityLab and meets by Zoom twice a month and has about 16 core members around the country. The group was the brainchild of vocational rehabilitation counselor Jessica Huerta, who got the idea for the group as she was interviewing people with Parkinson’s for an employment-related study funded by the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR) conducted by the Center for Rehabilitation Outcomes Research at Shirley Ryan AbilityLab. “What was lacking was a group that discussed work among the young-onset component,” Huerta says. “When we asked the study participants what they thought about a support group, they were very interested. We got a headcount and the rest is history.” The support group was initially funded by a $14,000 two-year grant from the Parkinson’s Foundation and is now supported by Shirley Ryan AbilityLab.
The first few sessions she attended were spent building connections, Johnson says, and at first people were a little hesitant to share personal information. But that reluctance fell away quickly as members shared their weekly highs and lows, which took the conversation in new directions. After attending a few sessions, Johnson says she was all in. “I’m one of the people who have had Parkinson’s the longest so it allowed me to share my experience with those who were newly diagnosed. I liked being helpful. After a couple of sessions, we started reaching out to each other after the meeting. Someone would say ‘I have a scan coming up,’ and then they’d hear from a group member asking how it went. That outside support is really nice. It’s nice to know that people are thinking of you beyond Friday afternoon.”
Steven Kleinman, a former energy industry executive, has also found the group very helpful. He had retired early from his customer training role but was working 30 or more hours a week for two Chicago-based nonprofit groups. “I wanted to find helpful tips and techniques that might improve my typing, which recently had become noticeably worse,” he says. “And I also wanted to share and help other people. I’m doing well now but in a couple of years, I could be on the other side. This was a way to pay it forward.”
Kleinman knew after the first meeting that he would continue to attend. “Everybody had slightly different stories but we were at similar points in our Parkinson’s journey even if we didn’t have the same symptoms. We were all doing ‘okay’ but we know the disease is incurable and we should expect to get worse as we age.”
One key topic that came up early on was whether participants should officially inform their employers that they had a disability. Doing so would allow them to request reasonable accommodations under the 1990 Americans with Disabilities Act but it would also open their medical records to scrutiny by their employers. Some group members worried they would be stigmatized at work if their condition was known or that they might be among the first to be laid off during a downturn.
Johnson told the group she hadn’t officially informed her company because she didn’t think there were accommodations for “my brain doesn’t work.” She did confide in a few close work friends so that they could quietly support her. Kleinman remembers pointing out that keeping silent had its own risks. “I said ‘You’ve got to tell someone, either your boss or your Human Resources representative, because one day you may fall asleep at your desk or stagger down the hall and someone will think you’re drunk.’”
Given the range of symptoms group members experience, medical topics regularly come up. Members have talked about different diets that they’ve tried and their experience with Deep Brain Stimulation (DBS), a surgical procedure that can ease the motor symptoms of Parkinson’s. Kleinman recalls that one group member was initially very resistant to taking a Parkinson’s drug that has helped many people feel better because of potential side effects. “It took about a month. We kept saying ‘Get a prescription and try it,’” Kleinman says. Finally, the holdout did try it and he was converted.
Huerta, the moderator, listens for issues that could be addressed by an outside speaker such as a disability benefits attorney or a neuropsychologist. About every third meeting has a guest speaker who gives a short presentation, leaving enough time for the members to ask questions and chat with each other. “As the disease progression goes, topics will change, needs will change,” says Huerta, who has stayed with the group even as she moved on from her position at Shirley Ryan AbilityLab. “I always tell everyone in the group that they are my teachers. I am an expert at nothing. I mean that in a true way. They are the ones living with Parkinson’s.”
(If you are interested in joining Parkinson’s Works, reach out to Paulo Aco at paco@sralab.org.)