David’s Story: Living Well With Dystonia
Education and Advocacy Cervical dystonia is a painful condition in which the shoulder and neck muscles contract involuntarily, pulling the head into unnatural positions.
Cervical dystonia affects both women and men, though it is more common in women and usually begins in middle age. Almost one percent of people over the age of 50 suffer from some form of dystonia. David, however, began experiencing the symptoms in his early twenties.
The early symptoms can be extremely distressing, and it can be difficult to get a proper diagnosis. Dystonia can be brought on by head injuries or neurological disorders like Wilson’s disease, but it can also be present on its own in what is known as primary dystonia. Primary dystonia can be misdiagnosed as Parkinson’s Disease or Tourette’s Syndrome, further delaying effective treatment.
“By working with a movement disorders specialist, a treatment program can be tailored to your individual needs and symptoms.”
The importance of early diagnosis
David was fortunate to get an early diagnosis and find Dr. Robert Chen of the University of Toronto, a neurologist specializing in movement disorders. Under the care and guidance of Dr. Chen, David has been able to manage his dystonia with regular exercise and a regimen of botulinum toxin injections to the affected muscles. These injections are generally seen as the first line of treatment for cervical dystonia but, for optimal efficacy, the regimen must be carefully tailored to the individual patient.
“That’s why it’s so important that those living with dystonia connect with a movement disorders neurologist as soon as they can, and that they educate themselves about their condition in order to play an active role in their treatment. Understanding your dystonia and how it impacts your muscles will help you to communicate effectively with your neurologist,” says David. “By working with a movement disorders specialist, a treatment program can be tailored to your individual needs and symptoms.”
The psychological effects of dystonia can be more challenging than the physical and the consequences of delayed or improper treatment are considerable. Cervical dystonia is not on its own a life-threatening disease, but the pain, discomfort, and altered self-perception of those living with it can have dire effects. In what are known as the ‘non-motor features’ of dystonia, it is common for sufferers to face depression, anxiety, social withdrawal and suicidal ideation.
“A comprehensive treatment approach that recognizes both the physical and psychological aspects of dystonia should be addressed with your movement disorders neurologist,” advocates David. He manages to maintain a high quality of life, building a successful career in sales with a large corporate firm and remains active in sports and social endeavors, but not all fare so well.
Fortunately, there are educational and support groups that exist to help those living with dystonia. “The simple aspect of engaging with other individuals who are experiencing the same condition can help greatly,” says Dr. Chen.
For those living with dystonia, perhaps the most potent medicine is the example of those like David, who are successfully managing this condition without letting it hold them back in life.