37-year old patient with cervical dystonia

Original story published on https://amadys.fr/temoignage/temoignage-de-m-adherent-dystonie-cervicale-se-reeduquer-apprendre-a-bien-vivre-maladie/

Having worked for several years as both a tour guide and a teacher in Paris, while pursuing my PhD in art history, I was diagnosed last year at the age of 36 with cervical dystonia. Receiving this diagnosis – which came, fortunately enough, only one month after my first symptoms had started to appear – had on me the effect of a real trauma. Indeed, the two general practitioners I had consulted, before being properly diagnosed by a neurologist, had initially tried to reassure me by telling me that what I was feeling would eventually go away. One of them, however, mentioned the term “torticollis” and luckily directed me towards a neurologist who happened to specialize in movement disorders, and who immediately established the diagnosis.

As traumatizing as the diagnosis may have been, it allowed me at least to put into words what was happening to me, to find out about the existing treatments available, to discover a number of patients’ stories, and to get in touch with Amadys, the French dystonia society, of which I soon became a member. I must say how important it was for me to come into contact with Amadys, some of whose members contacted me and gave me hope in the face of this complete turmoil in my life. (A turmoil which went as far as affecting most of my daily actions, such as eating, drinking, standing, walking, writing, talking to someone, walking into a store, opening the door of the subway, etc.)

I soon came to wonder about the “causes” of my condition, asking myself what could have brought about my cervical dystonia. I have always been a worrier, particularly during my studies, which I have long carried on in my life, at times while working in parallel. The impression that I had accumulated over time an increasingly unbearable workload, and that I was literally becoming overwhelmed with all sorts of professional and academic constraints, may have played a part in the onset of the condition. I soon realized, however, that it was pointless to try to establish one particular cause, and that I was better off using my time and energy to follow a suitable treatment. (For the rest of the article read our Winter 2018 issue)