Those in attendance at September’s Kelowna Okanagan Dystonia Support Group meeting included (from left) Nedeen Bazley, Anne Skomedal (co-leader), Stefanie Ince (Dystonia Medical Research Foundation executive director Jane Adamson, Carla Costain (co-leader) and Val Ebl. Photo Credit: Contributed
Living with a cruel disease
Kelowna woman suffering from dystonia, lost in shadow of similar Parkinson’s disease
Carla Costain had her whole life in front of her. At 20, she had started her career as a care aid at a Kelowna health care facility. An outgoing personality active in sports and recreation, a world of possibilities was opening up to her. Then on Aug. 7, 2004, while physically moving a patient, she felt a sharp tug on the left side of her neck which led to immediate muscle tightening. She left work and went home but the pain didn’t disappear. She didn’t know it at the time, but Costain was about to take a one-year journey of medical treatments, visits to two Kelowna neurologists and x-ray scans with the end result being diagnosed with dystonia.
In her case, the dystonia focused around her neck and shoulders, and Costain’s life outlook took an unexpected drastic change in direction. Besides being diagnosed with a disease that has no cure, because it affected her neck movement it left her face with difficulty walking or driving, carrying out basic grooming needs, and requiring home care from her mom and aunt. “It has been fortunate for me that I have a wonderful family that has been supportive of me through thick and thin,” said Costain.
“Dystonia is something that can, in my case, take over your life from a social standpoint, to feel uncomfortable or able to go out in public, do things like grocery shopping, to go up and down the stairs. “The simple things become a day to day challenges. It hard’s not to get emotional about it when you realize how (dystonia) is such a life-changing thing.”
Dystonia is a neurological condition that causes muscles in the body to pull or spasm, affecting one or more parts of the body. Dystonia creates uncontrollable muscle contractions—leading body parts to twist, repetitively and abnormally—in a regular and painful occurrence. While the symptoms can be similar to Parkinson’s disease, the two diseases are different. Dystonia can be either hereditary or, in the case of Costain, caused by secondary muscle stress or trauma. There are more than 50,000 Canadians diagnosed with the disorder, but because of low public or medical community awareness, there are likely thousands more undiagnosed, living in pain and managing severe stigma.
Since Costain suffered her initial dystonia-caused injury in the workplace, efforts to diagnose her problem and get her off Workers’ Compensation and back on the job expedited her diagnosis. “Because of that, it took about a year to get the diagnosis for me. Otherwise, I could have been living with this for two or three years, like so many other people do, before that could happen,” she said. With no cure, the only salvation from the pain and discomfort for Costain is a visit a movement disorder clinic at the UBC hospital in Vancouver to receive a Botox injection in her affected muscles.
Acting as a muscle relaxant, the Botox interrupts the neurological impulse for a specific muscle to constantly over-react, but it is a temporary fix that only lasts two to four months at a time. “It’s not a cure unfortunately but it does help your quality of life when the pain gets really bad,” she said.
With September being Dystonia Awareness Month, Costain is hoping to draw attention to the Kelowna Okanagan Dystonia Support Group, where people with dystonia can come together and share their life experiences in a way that few others can understand. Costain said being part of the support group has been helpful to her dystonia life-coping emotions, and she wants to reach out to others to share in that same benefit. "Dystonia can be a socially isolating disease that few other people understand or are even aware of,” she said. Dr. Silke Cresswell, an assistant professor of neurology at the UBC Faculty of Medicine, says research into the causes of dystonia and treating those diagnosed with it has gained momentum, but much more still needs to be done.
The Dystonia Medical Research Foundation Canada is an organization currently dedicated to supporting Canadians afflicted with the disorder and committed to supporting research, treatment, education and advocacy efforts.
There is now a movement disorder clinic in Kelowna, but Costain says the waiting list to get an appointment is beyond one year, leaving her to make the trip to Vancouver four times a year to get her Botox treatments. Cresswell said research for the genetic cause of dystonia follows a similar trajectory to Parkinson’s disease, in trying to isolate the gene responsible for it and resolving the underlying cell pathway mechanism that triggers it. As to why one muscle trauma can lead to dystonia and another doesn’t, Cresswell says that remains a mystery.
“The problem originates in the brain where it sends a signal to a muscle to be overactive but then it doesn’t stop sending that message. People who do repeat specific movements can often be susceptible to dystonia, such as musicians who practice several hours a day. I even had one RCMP officer who suffered from writing a lot of tickets, a kind of writer’s cramp dystonia.” Cresswell is quick to point out that active exercising or other activities that might strain muscles should not be abstained from because of dystonia fears.
“That would be the wrong message to send out, to be afraid to pull a muscle doing anything,” she said. “We just really need to do more research on what actually causes dystonia and how to cure or better treat it.
“Botox does well to control the symptoms to a reasonable degree, but it eventually wears off and it can’t be used if dystonia is prevalent widespread throughout your body. It is only effective in isolated muscle cases.” For Costain, Botox offers some relief yet she realizes it won’t help if her form of dystonia progresses further in her body.
“I just have to hope that doesn’t happen. For myself, I hope a cure can be found that will give me fewer muscle spasms and less pain, to be able to work again and live independently,” she said. The next Kelowna Okanagan Dystonia Support Group meeting will be Oct. 25 at Perkins restaurant in the Ramada Lodge Hotel, 2170 Harvey Ave. More information is available at DystoniaCanada.org.