'The hardest thing is to find a diagnosis': Calgary woman speaks out about neurological condition

A Calgary woman is spreading the word about an often misdiagnosed ailment, because of her own struggles with the neurological condition. 

Dystonia affects an estimated 50,000 people in Canada with 60 per cent suffering from cervical dystonia which affects the head and neck and is often mistaken for a stiff neck or arthritis.

“The hardest thing is to find a diagnosis for cervical dystonia,” said Astrid Frauscher.

She was diagnosed in 2015 after experiencing continuous pain and difficulty holding up her head. 

“My first doctor told me I needed to exercise and lose weight and it was just a sore neck, I woke up wrong and it would go away. “

It didn’t go away. It actually got worse. 

Within two weeks, her neck was bent over with her head on her left shoulder. 

“It was stuck," she said.

Any age

Dr. Davide Martino, a leading neurologist and professor at the University of Calgary, says the condition can appear at any age and present in different ways. 

“I want people to understand dystonia is not uncommon," she said. "It may be present and unrecognized.” 

“It is characterized by the presence of sustained and involuntary muscle contractions.”

He said seeing a neurologist is important. 

Astrid Frauscher is the head of a Calgary dystonia support group and holds several meetings a year to help people facing the condition.

Though the condition is not neurodegenerative, it can slowly progress.

No cure

There is no cure for dystonia but intervention can make a difference.

“We have really an arsenal  of possible therapies that we can use to improve symptoms and quality of life.” 

After getting properly diagnosed, Frauscher had two surgeries; one to improve her movement and another to help lift her head off of her shoulder. She also receives Botox treatments. 

“It’s only up until this year where I feel I can actually do things again. I was basically bed-ridden for six years.”

The condition forced her to leave a job and work team that she loved and rely on loved ones to help her and her young son.

Spontaneous

While some dystonia can result from a brain injury such as a stroke, trauma or infection, doctors say some cases begin spontaneously. That was the case for Frauscher.

“It is just the biggest relief to know that there is something wrong, out of your control, because a lot of people just think you’re crazy.” 

She is the head of a Calgary dystonia support group and holds several meetings a year to help people facing the condition. 

She says there is a team of specialists at Foothills dedicated to helping people with the movement disorder. 

Calgary Tower will be lit up blue on September 25 for Dystonia Awareness Month.

You can find out more about the Calgary resources for dystonia here.