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‘Are you going to have dementia’? Parkinson’s community struggles to overcome stigma

News last summer that a Parkinson’s Disease specialist had visited the White House on eight occasions led to widespread speculation that Biden had Parkinson’s Disease (PD); that his stumbling to find words, staring off into space and forgetfulness was all due to “dementia.”

For the Parkinson’s community, already fighting against stigma surrounding the disease, the news meant even more anxiety and fears of ostracization and discrimination, especially for younger people living people with PD

“Are you going to have dementia?” Esther Labib’s 11-year-old son asked the 49-year-old Texas mother living with PD. Life is hard enough “raising my kids with Parkinson’s while the whole world says it makes you incompetent,” she posted on X. “It’s a disease, not a slur.”

She was not alone, as PD patients railed against the “ageist and ableist” public perception and further amplified the misconception of a disease for “old white men in wheelchairs.”

“In our highly charged political climate, PD went from a neurodegenerative diagnosis to a weaponized insult in a matter of minutes,” says Allie Signorelli, a Washington, D.C., patient. The damage has been done from how the media mishandled this issue and that “those of us living with the disease are left to defend ourselves and our own abilities, something we have sadly grown accustomed to already,” she wrote in a blog past.

Larry Gifford, an advocate living with PD based in Vancouver and founder of the PD Avengers, says he felt what happened to Biden made him want to “defend and protect the Parkinson’s community.”

“When you see the entire media machine taking shots at someone who may have the disease, it’s like a curse word, he says, adding that it is disheartening. This type of framing will “keep people in the PD closet for longer” and “make people hide their diagnosis.”

Gifford, a veteran radio host, founded PD Avengers in 2022. It is an international group of patient advocates and those that support them and has established a thriving online community that meets monthly to prioritize issues related to people with Parkinson’s. They, along with physicians and researchers, have been lobbying for change, including the recent banning of TCE and Perc by the United States Environmental Protection Agency. These toxins have been associated with a 500 per cent increased risk of getting PD.

PD Avengers tries to counter the PD “fearmongering” campaign with vetted, accurate information to increase disease awareness and feature positive images of people who are not only living but thriving with the disease.

She thought that she would “lose her mind and die.”

It seeks to rebrand the disease with younger, more diverse and more vital profiles that reflect the resilience and positive energy in the Parkinson’s community, says Gifford. Having images of peers that look like them and are doing well goes a long way to creating hope and supporting newly diagnosed patients living with PD worldwide.

PD stigma is especially severe in younger onset patients, women and racially minoritized populations and can lead to shame, self-blame, low self-esteem and poor quality of life. Given that an estimated 50 per cent of people living with PD hide their diagnosis, the PD community has worked to raise awareness of the fact that up to 20 per cent of the 1 million people living with PD in the U.S. have experienced symptoms before the age of 50, and 40 per cent of the 10 million people living with PD worldwide are women. According to the Canadian Chronic Disease Surveillance System, there were 12,500 new cases of PD diagnosed from 2019-2020 and more than 103,000 cases of PD in Canada.

Labib says when she was first diagnosed with PD, she thought that she would “lose her mind and die.” The image PD conjured in her mind was that of a disabled old man hunched over with a walker and that she could not find anyone else that looked like her.

She has since met some other women and young people living with PD who serve as her inspiration and a ray of hope. She has a renewed purpose and meaning in her advocacy work and says her mere presence on social media will help the next newly diagnosed PD patient “see what an active and full life with Parkinson’s can really be like for a young woman and mom.”

 

 

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  • Lori DePorter says:

    The stigma surrounding Parkinson’s motivates the entire Parkinson’s Community. I have been managing Young-Onset Parkinson’s for 10 years. As a Parkinson’s advocate, I have seen many older patients working hard and fighting alongside those of us with Young-Onset Parkinson’s to live well. The Parkinson’s Community is diverse and vibrant.

    Thank you, Indu, for being a dedicated advocate.

Authors

Indu Subramanian

Contributor

Dr. Indu Subramanian is a Clinical Professor of Neurology. She received her medical degree from the University of Toronto, and did her neurology residency and Movement Disorders fellowship training at UCLA. Dr. Subramanian’s main research interest is on the effects of loneliness on people living with PD.

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