“When most people think of Parkinson’s disease, they think of the motor symptoms, or difficulties with movement,” said Dr. Marc Pell, Associate Dean and Director, School of Communication Sciences and Disorders, at the McGill University Faculty of Medicine. He says people think of the shaking hands and shuffling gait associated with Parkinson’s.

However, there are other “non-motor” symptoms of the disease, as well as the reactions of others, that can make coping with Parkinson’s most challenging. Some of the first symptoms of Parkinson’s can be depression, loss of sense of smell, and constipation, and these can appear well before any motor symptoms. 

As the disease progresses, other non-motor symptoms can include soft speech, frozen facial expressions and cognitive changes, even hallucinations and dementia.

Combined with the more obvious tremors or “freezing” of motor symptoms, some of these non-motor symptoms can cause or aggravate the stigma faced by those living with Parkinson’s disease, leading to family misunderstandings, job loss and social isolation.

The ability to communicate

“Parkinson’s disease affects the ability of patients to communicate and inter-relate with others,” Dr. Pell says. “These changes probably cause much of the stigma of having Parkinson’s, and impact the quality of life for those affected.”
Shifts in cognitive functions can include: altered language skills, an inability to understand non-verbal cues and a slowness of thought, which as a result can cause delayed or confused responses.

“I’ve also heard stories of how the personality and attitude changes after diagnosis have caused people to push their loved ones away, making it impossible to support them.”

“Once these non-motor symptoms begin, those suffering the disease will say they are perceived in a more negative manner by other people, and will face difficulties in social situations as their disease progresses,” says Dr. Pell.

Workplace stigma 

Motor and non-motor symptoms, as well as the misconceptions of others about Parkinson’s, can be especially harmful to relationships in the workplace, and can lead to tension between employees and their employers.

The loss of a job and subsequent legal action to gain justice was the experience of Stephanie Bruder of Belleville, ON, who has Parkinson’s and was employed at a call center in 2009. When her early onset symptoms appeared, her hours at the company were gradually reduced and she was increasingly marginalized, with no opportunity to fill other job vacancies at the firm.

She finally left the company and retrained at a local college to become a Developmental Services Worker (DSW). At the same time, she sought redress for the work changes forced on her, eventually winning a severance settlement through Ontario’s employment insurance mechanism.

Bruder is aware of others with Parkinson’s who are facing similar challenges. One, for instance who had their mortgage insurance policy cancelled. She’s heard stories of spouses who walked out of the relationship because they were not able, or willing, to take on the burden of someone in declining health.

“I’ve also heard stories of how the personality and attitude changes after diagnosis have caused people to push their loved ones away, making it impossible to support them.”

In addition to her work as a DSW, Stephanie Bruder volunteers as a facilitator with a Parkinson’s support group. It’s just one of more than 250 Parkinson Society chapters and support groups across the country helping people overcome the stigma and live their best lives with Parkinson’s.