The experience of this disorder is different for everybody. I’m a 47 year old man living with severe Cervical Dystonia. The experience of this disorder is different for everybody. For me, it causes significant disability and severe pain which has meant I’m unable to work and am significantly limited in what I can do on a day to day basis.
Despite a background as a health professional for 25 years I was unfamiliar with this condition Cervical Dystonia (CD) also known as Spasmodic Torticollis – until I developed it myself. I hope sharing my journey including the symptoms, the treatment and the impact it has on my life can be helpful to others. This is a journey which is very much still in progress so I’m going to share along the way.
I also hope to feature some interviews with other people with lived experience or professional experience of Cervical Dystonia.
This is an update on my personal journey with cervical dystonia. In this video I talk quite a bit about the non-motor symptoms that are a bit less obvious than the head pulling that everybody can see. Things like anxiety, depression and sleep problems.
Thoughts on shame & feelings of worthlessness and how they relate to my cervical dystonia. Sometimes the dystonia stirs up these feelings. Maybe those deep down long-held feelings even contributed to or exacerbated the dystonia.
Two weeks after my third Botox treatment for cervical dystonia and some benefit but still a ways to go. Trying to figure out how to get a haircut and go to the dentist with a head twisted to the side. Hmm.
This is my fifth video about my journey with Cervical Dystonia. In this video I talk about pain (and my frustration for those who have their pain dismissed), sleep disruption and discovering new connections and meaning as a consequence of dystonia.
This is my fourth video about my journey with Cervical Dystonia. In this video I talk about a minor accident I had on my motorbike and the physical and psychological pain that came with that. I talk about the grief of losing parts of your identity.
My 3rd video on my journey with Cervical Dystonia. And nothing much is changing. It’s a whole lot of…. sameness. Waiting for something to change.
I’m a 47 year old man living with severe Cervical Dystonia. This is the second of a series of videos where I’ll share my experience of what it’s like to live with this neurological disorder. In this video I talk about the timeline of symptom development and the impact Cervical Dystonia has had on my life. Chronic pain, loss of employment, social discomfort and functional limitations are discussed.
Despite a background as a health professional for 25 years I was unfamiliar with this condition Cervical Dystonia (CD) also known as Spasmodic Torticollis – until I developed it myself. I hope sharing my journey including the symptoms, the treatment and the impact it has on my life can be helpful to others. This is a journey which is very much still in progress so I’m going to share along the way.