what it feels like: paying it forward with parkinson’s disease
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while barbara continues to have a positive view of life and the world around her, it’s not always easy living with parkinson’s disease. she recalls feeling scared to share her tremor with others, trying to hide it away because she “felt stigmatized.”
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when barbara salsberg mathews began experiencing shaking in her hand, she went to her family physician to see what could be wrong. she was brushed off and told it was just a simple fact of aging, but deep down, she knew something wasn’t right.
“i remember finding it difficult to write on the chalkboard. i couldn’t hold my arm up. it was very weak, which was odd, and then i would go to the back of the room and look and see what i wrote, and everything was like a wave going down,” she said.
over the course of a year and a half, she persisted in getting down to the bottom of her symptoms, and in 2020, she was officially diagnosed with parkinson’s disease.
navigating ineffective parkinson’s treatment
following her diagnosis, barbara was put on a trajectory that she refers to as a “bad start.” she went to her diagnosing neurologist, and he put her on a full dosage of levodopa. the side effects left her with debilitating vomiting, dizziness, or hallucinations.
she would go on to experience severe side effects from four different medications. at one point, the adverse symptoms she was experiencing from her medication brought on “the belief that i was dying.”
“the doctor was giving me a cocktail of whatever he felt like,” she said.
her neurologist then suggested that she “mix and match” whatever she felt like because she knew her body best, and barbara’s mental health began to plummet, leaving her with a chemically-induced depression that led to suicidal thoughts.
cycling through different medications lasted for roughly a year, and when she could no longer deal with her neurologist’s guinea pig approach, she asked her family physician to help her find a new specialist.
she worked with her new neurologist and family physician to “wash the poisons out of” her system, and when all was said and done, the medications hadn’t done anything to help her symptoms. they had gotten worse.
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“i got mad, very mad,” said barbara. “i decided then and there i’m going to do the job that this neurologist was supposed to do. and i’ll be there anyway i can for my pd brothers and sisters, and that’s become my mission.”
since then, barbara has made a commitment to helping others with parkinson’s because she doesn’t want anyone else to go through what she did.
recalibrating her life after a parkinson’s diagnosis
prior to the onset of her symptoms, barbara was an “overly organized multi-tasker” with a high-level career as an artist.
she has received awards and grants for her work, some of which hang in toronto’s baycrest hospital, the guelph museum, and princess margaret lodge. before retiring, she was also the head of visual art at the toronto district school board’s northern secondary school.
her life as an artist was significantly affected by her parkinson’s disease.
“it was a hard shift. i was very sad,” she said. “i did not paint for two years.”
she now advocates for parkinson’s disease in many ways and has turned her talent and love for art into a way to help others in the community. she even went viral once, creating what is now widely known as the dopamine dance.
alongside the video, barbara wrote her own philosophy, which has allowed her to stay positive and harvest joy throughout her life after being diagnosed with parkinson’s disease.
“parkinson’s reminds me how precious life is. i’m aware of my diminishing time and energy to get things done, so i got rid of negative people in my life, and i focus on today and what i can leave behind,” she said, reiterating that philosophy. “and if i hear good music playing, you can be sure i’ll be dancing to it. parkinson’s can’t stop me from dancing.”
the reaction to her video gave her a window into what she could do now that she had parkinson’s in a way that was good for the world around her as well as herself, all while staying true to the artist within her.
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coping with the bad by doing a whole lot of good
while barbara continues to have a positive view of life and the world around her, it’s not always easy living with parkinson’s disease. she recalls feeling scared to share her tremor with others, trying to hide it away because she “felt stigmatized.”
she also struggles with fatigue, a symptom that is especially difficult for her to cope with because her entire life, she has been as busy as can be doing the things she loves in both her career and her personal life.
“it’s like a deep undertow that constantly pulls my energy,” she said. “i have to accept that whatever i used to do, i can do. but in double the time.”
barbara has also learned that when you have a chronic disease such as parkinson’s, some people see you as more of a “checklist of symptoms” than a person. this fact led her to create a book with others who have the disease from around the world called what parkinson’s feels like.
she used the words of others living with parkinson’s disease from around the world, each describing their own experiences with parkinson’s, and drew illustrations alongside them. her goal was to showcase how the community, while they all have the same disease, experiences their disease uniquely.
“people rose to the occasion and wrote such powerful and beautiful and sad descriptions, and it made me feel less alone,” she said. “i was very much moved by these people’s experiences.”
barbara has also used another skill of hers to share coping mechanisms with others living with parkinson’s—miming.
together with parkinson canada, she created therapeutic mime videos on a youtube channel aptly titled mime over mind. with her miming techniques, she hopes to teach people with parkinson’s how to manage their symptoms by giving them the ability to think more directly about their movements, thereby giving them more control.
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“i’m very passionate and determined to take what i’ve learned and have been trained to do and pay it forward, help my brothers and sisters (with parkinson’s),” she said, later joking, “i also get a dopamine rush. so, i pay it forward because i’m selfish. it makes me feel good.”
because of her own experiences, barbara has also created illustrations outlining the different types of people who can get parkinson’s disease so that others who may not fit the stereotypical “old white men” mould wouldn’t be brushed off as she was. her illustrations have even made their way into the hands of neurologists, with some thanking her for taking the time to help both people and physicians learn more about the face of parkinson’s disease and how varied it can be.
“most people think it’s for older people. there are a lot of young people with young onset parkinson’s, and we need to see ourselves, and the doctors need to see these faces to consider, maybe they have pd, and if you’re aware, then you can get help,” she said. “i keep thinking of ways to help.”
as for dealing with parkinson’s on a day-in-day-out basis, it’s not always easy. barbara can no longer run, nor does she have the strength to walk big dogs. she doesn’t have the energy to do as much as she used to do, but through her advocacy work, diet and exercise, and eliminating stress in her life, she’s living a happy life where she’s continuously striving to “cherish the small moments.”
“i value what time i have, and it doesn’t mean to necessarily do, do, do because, on the surface, i look highly productive. i’ve got these videos. i’ve got the book. i’ve got these illustrations,” she said. “but more importantly, i love life. i love a lot more … like taking walks with my husband by the river this morning. i can’t do everything that i used to do. i used to have a lot of big parties, dinner parties, but i cannot. so, i can have smaller and shorter visits, and i’m saying, at least, i can do that. that is wonderful. so, what i have, i cherish more.”
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