Opinion: Help is at hand for Dystonia sufferers

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Do you, or someone you know, have an unexplained tremor, frequent blinking, forceful closing of the eyelids, or a painful and twisted neck?

It could possibly be Dystonia. Dystonia is a term used to describe involuntary sustained muscle contractions that lead to abnormal movements and postures, with or without tremor. It is a neurological disorder that affects movement but it does not lead to problems with other parts of the brain such as intellect.

The spasms can be extremely painful as it forces muscles to adopt twisted stances. The causes of Dystonia are still not fully understood, but there is a problem in an area of the brain called the basal ganglia, an area which controls movement. This is the same area which contributes to other movement disorders such as Parkinson’s, Cerebral Palsy, and Tourette’s syndrome.

Basically this area of the brain is sending out rogue messages to certain parts of the body. It is not rare – it affects at least 70,000 people in the UK but little is known about it even by medical professionals.

Many sufferers face a long battle to get a diagnosis. In a recent survey by the Dystonia Society it was found that an alarming 69% of people had been mis-diagnosed at some point. One person had waited more than 30 years for diagnosis.

This situation both highlights how complex the condition can be and the lack of sufficient awareness among GPs. There are specialist neurological consultants who do know about the disorder but they are few and far between. At present there is no known cure, but the condition is not life-threatening. However it is definitely life-style threatening. Many people feel embarrassment and withdraw from public situations where others have to look at them.

My Dystonia, affecting my eyes at first, was diagnosed at a hospital eye clinic in 2007, where I was being treated for a weak left eye. Eyelid Dystonia is called Blepharospasm.

Within weeks my face began to contort and my head to push forward and down towards my chest. I suddenly could not sing, something which I loved to do all my life and speaking was severely affected and painful as my throat muscles tighten around my larynx and oesophagus.

I feel extremely embarrassed and sensitive while eating as chewing is a problem and I have great difficulty swallowing. My diagnosis then became Cranial and Cervical Dystonia.

It is most essential that a sufferer has sympathetic support from partners, family and friends.

They also need to feel that they must not shut themselves away. Stress makes the symptoms worse, then the pain becomes worse and the muscles tighten up even more, so it is a continual process. I find the need to try to rest at times through the day with back and neck support and listen to music, meditate, do breathing exercises or watch an interesting programme on TV.

There are several sites online to find out more information and the Dystonia Society is excellent and will provide you with support and information of help groups in your area.

Visit www.dystonia.org.uk to find out more. There is a Northern Blepharospasm and Meige’s Syndrome group ( face and eyes) which meet in Leeds every three months and also a group in Bridlington. The groups are friendly and it is essential for people to share their distress, experiences and helpful hints.