The power of positivity with dystonia

Sarah continues to play guitar despite her dystonia, a neurological disorder that causes intense cramping and involuntary shaking. Photo credit: Brittany Hebelka

“People used to not want to pick up a guitar when I was around, I used to be that good,” Sarah Leveille said as she picked up her guitar and her hands shook.

Something that used to be so simple has become so difficult.

Leveille, 30, found out she had dystonia when she was in fourth grade and experienced uncontrollable shaking in her left hand. She had no idea what was happening to her body.

She went to doctors many times starting in fifth grade. Finally when she was 15, she had a CT scan.

Dystonia cannot be detected by a CT scan and receiving a proper diagnosis can be difficult.

“Nobody wants to believe you’re actually sick,” Leveille said.

The effects of dystonia include cramping, constant pain from muscles never relaxing and possibly death due to an uncontrollable seizure the dystonia community has coined as a ‘dystonic storm’.

“I experienced one after giving birth to my daughter, I fell to the floor and my whole body contorted,” Leveille explained.

Her jaw contorted and spine curled upwards, she felt helpless lying on the floor as her whole body seized.

She described the pain as nothing she had ever felt before.

Dystonia is a neurological disorder, similar to Parkinson’s. It is what happens when the part of your brain that usually tells your body to relax no longer works properly. While almost everyone in Canada knows what Parkinson’s is, not many have ever heard of dystonia. While there are over 100, 000 people living with Parkinson’s, according to Dystonia Canada, 50,000 people suffer from the movement disorder in Canada.

While there is no cure, there are various therapies to ease the effects.

Nick, Leveille’s husband, said there are a lot of patients who use botulinum toxin (botox) as a treatment. Botox helps by easing the pain in the muscles and creating more support.

There’s some people that actually inject botox into their muscle to ease the tremor,” Leveille’s husband said.

Leveille says she used to get bullied a lot, by not only students but teachers as well. The disease was so foreign people did not understand what was happening to her.

I used to not be able to finish a five kilometre walk,” Leveille said. “But last year I completed Chuck’s Run in 35 minutes.”

Chuck’s Run run is dedicated to a young boy who passed away from dystonia. The run takes place in Toronto’s High Park, and the end goal is to raise money for the Dystonia Medical Research Foundation.

Leveille was an ambassador for the run last year on June 2. Leveille spoke publicly about her battle with dystonia and how she was able to overcome some of the hardships that came with it.

Speaking in public used to be extremely difficult for Leveille and if she had to be an ambassador ten years ago, her anxieties would have gotten the best of her.

Leveille said she doesn’t let the negativity take her over and continues to say “she has a lot to live for.”

Before she was 18, she struggled with drug abuse and parents who did not support her the way she needed. She said drugs like cocaine and ecstasy helped balance out her shakes in a way that prescription drugs did not. She continued using until the drugs had the opposite effect, causing the shakes to worsen and the anxieties to become unbearable.

“It started in one hand then slowly it went to my other one,” Leveille said.

By the time Leveille was 19, she had dealt with drug addiction. The addiction had then left her riddled with anxieties and agoraphobia.

“Every time I stepped outside, I had a panic attack,” Leveille said.

But through the years, she has fought hard to get where she is now.

“Seeing the progress and fight she has in her is motivating,” Levielle’s husband said.

She maintains a healthy lifestyle and has discovered marijuana is the one thing that truly eases her pain and anxieties in a natural way. Marijuana does not trigger any other urges for Leveille.

Leveille said, “I don’t even drink anymore.”

She said she’s a homebody and likes to hang out with her daughter and husband. Being home is also a comfortable place for her to practice day to day things like eating soup or put on makeup.

To put makeup on, she has to put whatever she’s applying in her right hand and then balance it with the left. She then has to lean over and place both hands up against the mirror to stabilize the action.

When she eats soup, she holds the spoon with the right and stabilizes with the left. There are still some tremors but they are noticeably less intense when both hands are involved.

Leveille and her husband said they laugh and make jokes about it all now. “It’s important to be positive and just enjoy life as it comes,” Leveille said.

After 15 years, she’s mustered up the courage to pick up the guitar again and is teaching herself little songs and riffs, like “Smoke on The Water”. She is still finding ways that are comfortable enough for her to play.

While playing music is still extremely emotional for her, she fights through the emotion to do something that brings her so much joy.

Leveille’s husband said that one day they are going to start a band. “Whenever she is ready,” he adds.