Vanessa is a musician who was diagnosed with neck dystonia (cervical dystonia) in June 2016. 

Neck dystonia is characterised by continuous or intermittent muscle contractions which cause abnormal, often painful, repetitive movements of the neck and head. The movements can lead to the head and neck twisting (torticollis) or being pulled forwards (antecollis), backwards (retrocollis), or sideways (laterocollis).

Towards the end of a long performance week in Easter 2016 my neck felt strange. I couldn’t put my finger on it but something just felt wrong. Initially my GP thought I had pulled a muscle, but within just a few months my neck muscles were pulling my head so strongly to the left I couldn’t look forward. By this point I was not able to get my trumpet anywhere near my lips and I couldn’t see straight to play the piano.

I again visited my GP who signed me off work and suggested an appointment at the optician. Although I was sceptical, I went to see the optician who suggested a referral to a neurologist. He thought he’d seen if before. As it turns out he was spot on with his diagnosis. Cervical dystonia.

The diagnosis was a relief but I was oblivious to the impact it would have. By the end of 2016 I had to stop work, couldn’t play the trumpet or piano, and couldn’t drive. Inevitably my mental health took a nose dive. I’d suddenly lost everything I knew, everything which defined my identity.

Whilst my GP couldn’t offer any magic cure, he always asked if he could help. At one appointment he asked me and my answer was simple, help me to play the trumpet again. He agreed to let me try a soft neck collar on condition I only used it when I was playing. We knew that advice varied on the use of a collar but I just needed some hope.

I kept returning to the trumpet to see if there was any improvement. The head and neck were unstable and painful but I was able to coax some notes from the instrument! Whilst my mental health was at rock bottom, having being diagnosed with depression and anxiety, I saw an advert for Bader’s Big Band. The band is supported by the Douglas Bader Foundation. The aim was to support disabled musicians to make music. This was something that really appealed and I sent off my details, not having played in public for almost two years.

I can’t tell you how uplifting that first rehearsal was. Suddenly I felt as if some of my world was returning.

The neck was unstable and despite medication it left me in pain for about a week afterwards but it was worth it. My spirits were really buoyed by the opportunity to make music once more. Music has the ability to enhance our lives and being able to join such a wonderful group of musicians with a range of disabilities was the most amazing thing I have ever had the opportunity to do.

The band continue to grow, having had our first public performance. We continue to meet, share stories and share support to help us cope in times of difficulty.

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