Working with Parkinson’s: Complex Questions Surrounding the Decision to Disclose Diagnosis 

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After receiving a diagnosis of Parkinson’s disease (PD), many people assume that their working lives are over -- or soon will be. Some take early retirement. Others go on Social Security disability. But many want to continue to work, either because they are in their prime earning years, they need the insurance coverage, or they love what they do and thrive on the stimulation of being around other people. The toll on their work lives is particularly acute for those with the early-onset version of the disease, which can affect people as young as their 30s or 40s. The actor Michael J. Fox was diagnosed with Parkinson’s when he was only 29.

Parkinson’s is a neuro-degenerative disorder caused by the die-off of dopamine-producing neurons in the substantia nigra portion of the brain. It is characterized by tremors, limb rigidity, balance problems and cognitive impairment. Symptoms may also include mood disorders such as apathy and depression, sleep problems and loss of the sense of smell. Yet there is no typical path for Parkinson’s progression and nothing has been found so far to stop it. Dopamine-replacing drugs can control many of the early symptoms although the drugs become less effective over time. There are non-pharmaceutical approaches as well. Neurologists specializing in movement disorders, which include Parkinson’s, are finding that physical exercise like yoga can improve patients’ mood and slow the disease’s progression. “It is possible to have a good to great quality of life with PD,” states the Parkinson’s Foundation website. “A Parkinson’s diagnosis does not mean your career is over.”

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Yet research has found that people with Parkinson’s leave the workforce at an average of seven years after diagnosis and five years earlier than people without the disorder. Many newly diagnosed people with Parkinson’s avoid telling their employers and coworkers about their condition because they fear stigma and repercussions even though they are protected by the 1990 Americans with Disabilities Act. The ADA requires businesses with more than 50 employees to make reasonable accommodations for workers with disabilities as long as they don’t create “undue hardship” for the business.

The Center for Rehabilitation Outcomes Research (CROR) at the Shirley Ryan AbilityLab is in the early stages of a study into whether providing vocational rehabilitation counseling and resources to people with Parkinson’s can help them retain their jobs. The study will follow 60 people with Parkinson’s over a three-year period. The researchers will monitor how job-related pressure is affecting their lives and what kind of accommodations the patients and their employers are making to deal with it. “Because Parkinson’s is a progressive neurological condition primarily affecting people in their mid to late careers, anything we can do to maintain employment of this group would be very valuable,” says CROR Director Allen Heinemann, Ph.D.

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Unlike when people experience a stroke or a spinal cord injury, the onset of Parkinson’s isn’t always obvious to co-workers or managers. That adds complexity to the question of when and whether to inform one’s bosses about the condition. “It’s a challenge to decide when it’s bad enough to interfere with their work. There are a lot of self accommodations that go on,” Heinemann says. “And there can be stigma around Parkinson’s disease like there can be around any physical and cognitive condition. It can also make coworkers anxious about their own mortality and vulnerability.”

Rochelle Lodder, a Chicago editor of scientific manuscripts, never even thought about the profound consequences of letting her boss know she had been diagnosed with Parkinson’s disease. She was only 48 when she noticed that her left foot wasn’t acting the same as her right foot in ballet class, and she was having difficulty raising her foot to her bicycle pedal. Because Lodder’s father had Parkinson’s, she was particularly attuned to the subtle signs that something was off. Lodder told her boss immediately and said she wanted to continue working. “I really wanted to feel normal and do the same things I had been doing. I had to change my athletic activities and I couldn’t stay out late on Saturday nights, but I liked working full-time and seeing my friends. It made me feel normal and was comforting to me.”

Lodder, who received her diagnosis in 2015, continued working for 18 months but then began losing her balance and falling in the office, which alarmed her coworkers. She also experienced an episode when she froze in the middle of an intersection and couldn’t make her way to the other side without assistance from a stranger. As soon as her boss heard that story, her manager scheduled a meeting with the human resources department, and Lodder lost control of the situation.

“They never asked what I wanted. As far as ADA accommodations, I was just told what I was going to get,” Lodder recalls. Her employer insisted she use a walker when she was in the office or on company property. They also moved her from a cubicle to a private office, which made her feel exiled. The situation worsened when Lodder began struggling to keep up with her workload, and her boss declined to ease up on her assignments or give her more time to complete them. Eventually Lodder was given an ultimatum: go on long-term disability or accept a clerical job with less responsibility. She decided to leave in 2018.

After visiting lots of museums and trying new pursuits like boxing, Lodder started doing some pro bono editing for a Chicago political news magazine. Then she filled in as an editor at the Chicago Reader and loved it. In early 2019, she reached out to a prestigious academic publisher in Great Britain and asked about freelance work. She now spends about 20 to 25 hours a week editing a journal focused on the science of big data sets and is paid by the word, not the hour, so if it takes her a little longer to edit than it used to, that’s not a problem. “It’s been great, but I do get a little lonely being at home,” she says wistfully. “I was the kind of person who loved the hustle and bustle of an office.”

In retrospect, Lodder believes that things worked out for the best. She is still editing and now has the flexibility that comes with working part time and setting her own hours. “I'm really happier working for a completely different employer who is pleased with my work and does not question my competence,” she says.