Recently an English lady suffering with longstanding cervical dystonia decided to end her life, with the help of Dignitas in Switzerland.. This tragic event reminds us as doctors how difficult it can be to live with dystonia. I gave a lecture few months ago for the Dystonia Society in London about disability, distress and despair when living with dystonia. The patients afterwards told me how important is it to feel understood and recognized in their fight against this condition..
-Disability can be overwhelming, as dystonia is brought up by action and interferes with daily life activities. Some patients are blind as they can’t open their eyes, some can’t write, others can’t speak, or can’t walk without fighting with their painful twisty neck.
-Distress at the time of the diagnosis can be profound. The diagnosis is always delayed; the presenting symptoms are often unusual and intermittent at the beginning, making it difficult to be recognized by non-specialists.
-Fall into despair is precipitated by the patient’s lack of knowledge about his condition. They do not understand what’s happened to them and what to expect from the treatment. They need help to begin to accept that their life may be scheduled into 3 months interval of repeated Botox injection. The chronicity of the symptoms and the associated pain can also lead to a vicious circle of depression, chronic pain and worsening of dystonia. The depression needs to be treated to break this vicious circle.
I feel strongly that we can fight each of these dramatic consequences and improve the life of the dystonic patients.
-Education of the patients about dystonia ( Dystonia society, Patient’s support groups, this blog) allows them to become the actor of their treatment and to work with neurologists for a positive outcome.
-The therapeutic strategies (drugs, botox injection, physiotherapy, brain surgery) are available to alleviate the disability.
-A multi disciplinary approach working with physiotherapists specialized in pain and dystonia, and a holistic approach of the patient focusing on both motor and non-motor symptoms, can help patients to live with their dystonia.
The specialists in dystonia and its treatment are joining their efforts at every level: national ( British Neurotoxin network), European ( European Dystonia Federation) and world wide ( Dystonia Coalition). Research on dystonia is very active all over the world.
Both patients and doctors have to be convinced that there is light at the end of the tunnel and keep hoping for a better future.
Dr MH Marion is a neurologist in London, specialist in Botox treatment for dystonia: blepharospasm, cervical dystonia, jaw spasms, writer’s cramp and spasmodic dysphonia.
Infodystonia 