Dystonia is the term used to describe uncontrollable and sometimes painful muscle spasms caused by incorrect signals from the brain. It is estimated to affect at least 70,000 people in the UK. There are a large number of different types of dystonia which affect people in widely differing ways including causing difficulties with sight, movement, eating, talking and writing. Unfortunately there is not yet a cure.

The Dystonia Society is the only UK Charity set up to support those affected by dystonia and we are working to increase awareness of dystonia among the general public and medical professionals. A lack of understanding can have a major impact on people’s lives.

Andrew's story

Andrew RussellHere Andrew Russell, who has myoclonus dystonia, tells his story:

“When I was diagnosed in 2005 aged 48 I realised I had suffered from a form of dystonia since my childhood. The diagnosis had come almost 50 years of confusion over neurological and physical symptoms that made schooling, starting a career and progressing in life difficult.

Going back another generation, my father had always had jerky muscular movements and difficulty with fine motor skills such as writing and holding an open cup without spilling its contents. He was a child of the 1930s and 40s and had protective loving parents who supported him but could get no diagnosis. I was told he had been born with his condition and was a sensitive and nervous man. This was perhaps as much as the GP had told his parents. Like many others of his generation he carried on his life undiagnosed through lack of knowledge and proper referral. This created stresses – on going for a medical as a young man he couldn’t get life insurance as he was thought to have Parkinson’s Disease, he tried to learn to drive but did not have the co-ordination to do so. Each stage of life was difficult with extra hurdles to deal with yet he faced them as best he could.

My mother was just as confused and after his parents died he broke down and began intermittent psychiatric care. He went down the psychiatric route so common then for many movement disorders. The view medically was very often that it was all psychological; ‘Until the 1970s most patients with dystonia were referred to psychiatrists in the belief that these curious motor disorders were an expression of an unhappy mind’[i] Electro-convulsive therapy, major tranquillisers – a variety of medications were used. My father’s physical symptoms stayed the same, but he developed a bi-polar disorder and was described to the family by his GP and Psychiatrist ‘as a very complex case’.

Then disability and particularly mental illness were seen by many as something that wasn’t talked about and even shameful - as a family we lived in silence about my father’s condition. It was something we couldn’t decipher and there seemed no support or information we could turn to. No dystonia charity organisations existed and very few doctors or specialists knew enough about the condition to diagnose it. When I realised I was developing milder but similar physical symptoms I lived in a state of terror. Would I go mad too? I was prescribed tranquillisers which helped. Tremor and muscle discomfort were reduced yet when my mother found out she feared I was sinking into a state like my fathers. ‘Come off these drugs’ she pleaded ‘or you will end up like your father’. I became more confused as from the 1980s tranquillisers were given a terrible press with newspaper reports saying, ‘since they came on the market in the late Fifties, tens of thousands of people have become addicted to them and hundreds have died’[ii] An unjustified reaction to a drug that has helped many with dystonia in a positive way when used and prescribed correctly.

Andrew and his dadMy father was medically retired in 1984. This was the time when I was at a low myself, yet awareness of dystonia was growing. A modern definition of dystonia was worded in that same year.[iii] The Dystonia Society UK charity was registered in 1984, AMADYS, the French association for people with dystonia started in 1987, the Swedish Dystonia Association was founded in 1991.  Information and research increased and could be shared and disseminated more easily.  Most importantly the time it took to diagnose many patients dropped significantly. The ‘unknowing’ generation of my father’s time was passing.

In the last twenty-five year treatments have become established; botulinum toxin injections for cervical and other dystonia’s, a greater more enlightened understanding and development of medications to control the condition and of course deep brain stimulation for more severe cases which has grown in effectiveness as many thousands of operations are performed for dystonia and Parkinson’s Disease. My diagnosis was a revelation and as I described my father’s symptoms the neurologist felt convinced my father had suffered from dystonia all his life. Perhaps because of him I have pro-actively accessed the treatment and help I need, worked for the Dystonia Society UK London support group finding speakers and writing articles, even attending a dystonia Symposium in New York and in the process making up for my father’s ‘silent voice’ and fearful suffering.

Recently I got in touch with a family who have a son who is now a teenager at college. He has the same condition I and I’m sure my father had - myoclonus dystonia. I first read about him in an article in the Dystonia Society’s newsletter[iv] and that he was diagnosed at the age of three and they made me clearly see how things have moved on. But life challenges still exist for all people with dystonia. Not only has awareness got to continue to grow but society’s attitude must change to give all of us a better, more equal chance in life.”

A conference for parents and carers of children and young people

The Dystonia Society Helpline have been taking numerous calls from parents experiencing the impact and challenges of dystonia on their children’s life.

The Dystonia Society are hosting a Conference for Parents and Carers of Children and Young People with Dystonia on Saturday 22nd September and look forward to offering a special day for the children with organised activities and an informative and empowering day for the parents and carers who will have the opportunity to meet with other parents, listen to professional medics/speakers and meet with The Dystonia Society staff.

If you are interested in attending this event please contact Angie Brown on 020 7793 3657 or [email protected]

[i] Regular Review: The dystonias: neurological disorders affecting 20,000 people in Britain. British Medical Journal p.139 Vol. 300 20 Jan.1990

[ii] McVeigh, T. Tranquilisers ‘more lethal than heroin’ p.15 The Observer 5 November 2000

[iii] Fahn S, Marsden CD, Calne DB. (1987) Classification and investigation of dystonia. In: Marsden CD, Fahn S, editors. Movement disorders 2 ed. By Marsden CD, Fahn S. p.332-58. London: Butterworths.

[iv] Parker, J. (2009) My story: sticking the pieces together. In Dystoniamatters! Issue 66 pp.19-20