Chrissy shares her experience of being diagnosed with neck dystonia.

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).

What a privilege this is to be able to share my journey into my discovery of dystonia. Allow me to introduce myself. My name is Chrissy, I am now retired and 73 years old. My job role was very public facing, bringing pressures, but I loved it. I now live in Essex.

My life had its challenges before my accident late in 1998. However, now coping with the fall out of a head on collision on a bend in a lane in Kent gave me another challenge, sustaining concussion and a broken sternum, off work for a month, but fortunately surviving.

Some months later at work, I noticed whilst working at the computer my neck gave a violent painful movement to the left. Initially I didn’t labour too much thought about it. However, these movements became more noticeable over time. The pain was incredible. My head became distorted, wanting to pull left, affecting my face, and making sideways movements in all odd positions. Unfortunately, little if anything is known about this condition. Even to this day, many medical professionals are not aware of dystonia.

“The pain was incredible. My head became distorted, wanting to pull left, affecting my face, and making sideways movements in all odd positions.”

I decided to visit my GP to discuss my concerns. Although he had no answers, we did discuss a referral to a neurologist. I chose to take the plunge and go privately rather than wait. I saw a neurologist quickly and, following neurological tests, I had my answer. I was officially diagnosed with neck dystonia (spasmodic torticollis, cervical dystonia).

Well I said “How? Why? Will it improve?”. His response was “Well, it’s something in the brain, we don’t know the answer”. Unfortunately I felt very faint with the news, it was quite a shock. Quite funny at the time, he said you can’t stay here I have another patient, then arranged a nurse to take me to a side room.

A few months later, I arranged to see another neurologist. He had more of a bedside manner (if you understand my thoughts) - very attentive, explained what was happening, and how it may affect me. We discussed treatment and botulinum toxin injections were suggested plus medication if needed. I left with some fear for my future as to how I was going to look etc., it was a lot to take in.

However, my late daughter spent time finding out about my condition which gave me strength to go forward.

Although I would never change it, dystonia was not my priority, my daughter’s health was. For 19 years, I coped with the spasms. I took control of my dystonia as best I could, which had become my friend, not my enemy.

I became a member of Dystonia UK (then known as The Dystonia Society) and became heavily involved in the Dystonia UK Kent Support Group. My neurologist and I had a good relationship, and he asked me to involve myself in his clinic giving advice to other people with dystonia. My training also as a counsellor had its benefits with this. I had still not requested any treatment.

“A few months later, I arranged to see another neurologist. He had more of a bedside manner (if you understand my thoughts) - very attentive, explained what was happening, and how it may affect me. We discussed treatment and botulinum toxin injections were suggested plus medication if needed.”

A year after my daughter died, I gave myself priority and started my journey with botulinum toxin injections administered by my neurologist. My ’friend’ was getting help.

Dystonia thrives on stress, “bring it on” it says.

For 5 years I have been involved with meditation through mindfulness. Believe me, my tremor is the issue, but during meditation my head is still - this has been videoed by my teacher.

We all deal with our diagnosis in different ways, I respect that of you all.

I share my dystonia. I am me, my ’friend’ will not control me, it is never hidden. My passion is to be with and walk with others who are diagnosed.