Carla Costain had her whole life in front of her.
At 20, she had started her career as a care aid at a 麻豆精选 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鈥檛 disappear.
She didn鈥檛 know it it at the time, but Costain was about to take a one year journey of medical treatments, visits to two 麻豆精选 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鈥檚 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 faced with difficulty walking or driving, carrying out basic grooming needs, and requiring home care from her mom and aunt.
鈥淚t has been fortunate for me that I have a wonderful family that has been supportive of me through thick and thin,鈥� said Costain.
鈥淒ystonia 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.
鈥淭he simple things become day to day challenges. It hard鈥檚 not to get emotional about it when you realize how (dystonia) is such a life changing thing.鈥�
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鈥攍eading body parts to twist, repetitively and abnormally鈥攊n a regular and painful occurrence.
While the symptoms can be similar to Parkinson鈥檚 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鈥� Compensation and back on the job expedited her diagnosis.
鈥淏ecause 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,鈥� 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.
鈥淚t鈥檚 not a cure unfortunately but it does help your quality of life when the pain gets really bad,鈥� she said.
With September being Dystonia Awareness Month, Costain is hoping to draw attention to the 麻豆精选 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.
鈥淒ystonia can be a socially isolating disease that few other people understand or are even aware of,鈥� she said.
Dr. Silke Cresswell, an assistant professor of neurology with 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 support research, treatment, education and advocacy efforts.
There is now a movement disorder clinic in 麻豆精选, 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鈥檚 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鈥檛, Cresswell says that remains a mystery.
鈥淭he problem originates in the brain where it sends a signal to a muscle to be overactive but then it doesn鈥檛 stop sending that message. People who do repeated specific movements can often be susceptible to dystonia, such as musicians who practice severals hours a day. I even had one RCMP officer who suffered from writing a lot of tickets, a kind of writer鈥檚 cramp dystonia.鈥�
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.
鈥淭hat would be the wrong message to send out, to be afraid to pull a muscle doing anything,鈥� she said. 鈥淲e just really need to do more research on what actually causes dystonia and how to cure or better treat it.
鈥淏otox does well to control the symptoms to a reasonable degree, but it eventually wears off and it can鈥檛 be used if dystonia is prevalent widespread throughout your body. It is only effective in isolated muscle cases.鈥�
For Costain, botox offers some relief yet she realizes it won鈥檛 help if her form of dystonia progresses further in her body.
鈥淚 just have to hope that doesn鈥檛 happen. For myself, I hope a cure can be found that will give me less muscle spasms and less pain, to be able to work again and live independently,鈥� she said.
The next 麻豆精选 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.
@BarryGerding
barry.gerding@blackpress.ca
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