How one woman’s dancing inspired the Parkinson’s community
A talk with the advocate whose tweet started all kinds of movement
When Barbara Salsberg Mathews moved, the world moved with her.
Barbara is an artist, mother, and Parkinson’s disease (PD) patient and advocate on a journey she calls “A Shaky Start.” She uses dance and her experience as a professional mime to manage her symptoms. Barbara unexpectedly became a social media sensation when a tweet with a video of her dancing went viral within the Parkinson’s community and evolved into the Dopamine Dance Against PD campaign.
She created the online campaign with the help of Richelle Flanagan, co-founder of the nonprofit PD Avengers and a common acquaintance who introduced me to Barbara. Through this campaign, Richelle and Barbara hope to raise awareness of the disease in the days leading up to World Parkinson’s Day on April 11.
I’m humbled that Barbara graciously shared her story with me via email. Excerpts from our conversation follow.
LD: What inspired the original tweet?
BSM: I was having one of those philosophical, “what is life” moments. So I wrote down my philosophy: “Parkinson’s reminds me how precious life is. I’m aware of my diminishing energy and time to get things done. So I’ve removed negative people from my life, focusing on today and what I can leave behind. If I hear good music, you can be sure I’ll be dancing to it.”
My niece was with me, so I turned to her and announced, “I’m going to dance.” So I just broke out and started to dance, and she filmed me. I thought just as a lark, I’ll send it out to my friends on Twitter and include my philosophy. It went viral [within the Parkinson’s community]. I was quite surprised. Last I checked it was at 15,000 views. [As of April 6, the tweet has over 16,000 views and the video has over 4,000.]
How did this project come together?
In response to my tweet, people spontaneously shared film clips of themselves dancing. Maybe it was the sentence I used when posting it, “Parkinson’s Disease can’t stop me from dancing,” or maybe it was the dopamine rush of seeing someone enjoying dancing just for the fun of it. I’m really not sure. It certainly resonated with others.
People said this should turn into something like the ALS Ice Bucket Challenge, only for Parkinson’s. One person came up with the hashtags to use: #dancepartyPD #dance4parkinsons.
Richelle said this could help draw attention and create a greater awareness of Parkinson’s. She is so inspiring. Despite the fact that she has [young-onset Parkinson’s disease], is actively parenting two children, co-founded a new educational health app, My Moves Matter, and is very involved as a PD advocate and educator, she still found the time and energy to help guide me to effectively translate my tweet into a global event to help raise awareness of Parkinson’s.
The event, Dopamine Dance Against PD, [kicked] off on April 3 and builds up the excitement for April 11, World Parkinson’s Day.
How to get involved
Thanks, Barbara! To add to the campaign and show the world your moves, post a video of you dancing to social media and include the tags #dancepartyPD and #dance4parkinsons. Be a part of the day whose logo is a “Spark” that symbolizes our lost dopamine. This Parkinson’s Awareness Month, we’re taking it back.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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Comments
DOLORES REIMAN
the two most important things in the fight against THE BEAST are attitude and exercise So keep those jumping jacks coming, with a smile on your face. . DAR
Lori DePorter
Thank you - We all will keep dancing!
monica prescod-holder
so inspiring, I wish I knew more about this devilish decease before it took my mother. Thank you for sharing. Keep on dancing, keep fighting, and stay positive.
Lori DePorter
Thank you for sharing - your mom was lucky to have you! I will continue to dance, and fight with exercise and my attitude while helping others do the same!
Sarah Beer
I discovered the English National Ballet’s Dance for Parkinson’s classes four years after my diagnosis, which was given to me a month before my husband died, aged 66, with Alzheimer’s and my younger daughter gave birth to our first granddaughter. A kaleidoscope or rollercoaster of emotions, as you can imagine.
The dance classes were and are, truly wonderful: they embody the true essence
of “Re-creation “. My movement is freer, my tremors abate, my energy rises and my ability to concentrate is quadrupled. I feel that I belong to a new community, almost a family, in a safe place where we are respected and acknowledged by the teachers, volunteers and musicians. It is a place where we, who live with PD, can share our experiences, moan and laugh together and share ideas and strategies. Another amazing fifth was that in 2017, the Mark Morris Dance Group performed in London and gave us a masterclass, led by the multi -talented David Leventhall. He showed us the DVDs of their classes in their HQ in Brooklyn. I ordered then all and use them regularly, especially in “Off” times, or when depression threatens to engulf me.
Then came COVID,a terrible blow for everyone in the world, but… the blessing of Zoom entered my existence. Not quite as powerful as a live class, but a glorious substitute. I discovered that the M.M. was doing a Zoomed class on Monday mornings, 11.00 am in the Brooklyn time zone and 16.00 in GB! So I join in with that and highly recommend the class led by David, who is a most inspiring teacher. Each class is designed round a theme, so we learn a variety of dance styles, accompanied by music that ranges from J S Bach to Dolly Parton!
The ENB classes focus on a ballet in the current repertoire, and are cleverly planned to include us all, through adaptation, individual, paired and whole class improvisations, voice work, and certain ballet styles, and positions. The crowning glory is a chance to attend each ballet in excellent seats at low prices.
Have a go, everyone, whatever stage of PD you are living with.For some time after the class has finished, I feel like a Prima Ballerina, and all the huge and minute annoyances of PD are dispelled!
Re-creation “.
Lori DePorter
Thanks for sharing, dance like no one is watching!
Lori