Dystonia is a neurological disorder that causes uncontrollable spasms, abnormal posture and sometimes pain.
70,000 (Around 1 in 900) men, women and children in the UK have the condition; however, this figure could be higher due to misdiagnosis. By comparison, Motor Neurone disease affects around 7 in every 100,000 and 1 in 500 people have Parkinson’s.
Symptoms often begin with a muscle twitching or going into spasm. The pain can feel like toothache or severe cramp and the affected area may twist into unnatural postures or jerk suddenly. There is no known cure although there are medical interventions that may alleviate symptoms and certain alternative and complementary therapies, such as meditation and shiatsu, have been found to be very effective.
Sharon Cattermole has suffered with Dystonia since 1983, although it was many years before the uncontrollable spasms were formally diagnosed. Sharon tells her story and provides information and advice to help anyone who may be suffering from this condition.
My Dystonia began in June 1983. On the way home from a concert, my neck started twitching. My doctor diagnosed pre-college nerves and during my first term at Chester, I had weekly sessions of physio. The following summer, an osteopath suggested X rays to check for broken bones as the pain had become unbearable and my neck was twisting to the left. The X rays revealed no breakages but the consultant was baffled.
Unfortunately, comments such as “why is your head moving?” and “stop moving about” from family members did not help. After further aggressive manipulation a year later, I had two weeks without symptoms. I knew then it was ‘not all in my head.’
When the spasms returned, I learnt techniques such as pinching my ear, pulling my hair and holding my chin, which play sensory tricks on the brain. I graduated, worked in London, travelled round the UK coast and gave up looking for an answer to my symptoms. Heat pads, special cushions, acupuncture and homeopathy helped with relaxation but my posture and confidence suffered.
In 1992, my husband, then my boyfriend, assured me there was an answer. A few weeks later, whilst working as a temp at RBS, a colleague recognised the condition. It was a relief to have a name for my symptoms and share frustrations with another sufferer.
I was formally diagnosed by the late Professor Marsden at the National Hospital in Queens Square, London and that year I had my first three- monthly Botox injections.
I don’t know what caused my Dystonia. During childhood I had many slips and falls and as a teenager I had several emotional shocks. Since the age of 11, I’ve had spasms in my right hand which has now been diagnosed as writer’s cramp.
Dystonia has caused my head to twist violently to the left or pull back. Water and travel pillows have been helpful and a heated wheat bag eases the pain. However, I stopped having Botox injections in August 2008 due to a powerful meditation in November where my symptoms disappeared for 12 hours. Now shiatsu is helping to relax the muscles and free up my tense body and I also receive moral support from the Dystonia Society. As an active member of the Essex group, I help with fundraising and awareness.
Cervical Dystonia (spasmodic torticollis) also known as wry neck is the most common type. The condition can affect any part of the body; blepharospasm involves the muscles around the eyes; ormandibular dystonia causes spasms in the jaw, tongue and mouth muscles; laryngeal dystonia attacks the vocal chords and in the hand it is called writer’s cramp. Dystonia affecting two connecting parts of the body, such as the neck and arm, is called segmental; an arm and leg affected on the same side is known as hemidystonia. Multifocal dystonia attacks several parts of the body and generalised can involve most of the body. Paroxysmal dystonia affects the whole or part of the body for short intervals and myoclonus dystonia takes the form of sudden jerking movements. In children, the condition can become generalised, whereas dystonia in adults may affect only one part of the body (focal dystonia.) This is more common in those over 40 years of age.
The condition can be hereditary or brought on by lack of oxygen. Anti-sickness drugs and neuroleptic medication, used to treat serious mental illness, or a physical/emotional trauma can also trigger dystonia.
Currently there is no cure. The medical profession are concentrating on gene research. Evidence suggests an imbalance in neurotransmitters in an area at the base of the brain called the basal ganglia. These are a collection of nuclei that modify movement, sending messages to muscles telling them when to start moving and when to stop. In dystonia, these instructions become irregular and chaotic, causing involuntary movements.
Symptoms can be alleviated by botulinum toxin (Botox) injections or medication. In extreme cases, an operation may be carried out. Selective denervation, involves cutting the nerves to the neck muscles to treat cervical dystonia. In deep brain stimulation (DBS), a battery device is placed under the skin in the chest and connected to electrodes implanted in the brain. Both procedures are performed under general anaesthetic.
Derek Thompson, Charlie Fairhead in the BBC television drama ‘Casualty,’ shared his story with the Daily Mail in 2006. The vicious cramps and neck movements he experienced were immediately relieved by his first Botox injections. Fortunately, a diagnosis was made two years after his first symptoms, but for many it can take a lot longer. Julie Sheldon was struck down with generalised dystonia in the late eighties and had to give up a career with the Royal Ballet. At one point she was left struggling for breath. She received aggressive treatment to control the condition but the cure she, and those close to her had been praying for, came in the form of a miraculous healing. Now she is completely free of dystonia and her book ‘Dancer of her Feet’ describes her journey with the illness.
Sadly, many sufferers are still unaware they have dystonia; events like the London Marathon help to highlight the condition, but more needs to be done to raise awareness.
For free advice and information about the condition please visit The Dystonia Society website at www.dystonia.org.uk or call the helpline on 0845 458 6322.
For local support please contact Group Co-ordinator, Molly Perry on 0845 899 7117.
One phone call could make all the difference to someone’s life.