Donald MacPhee
I was 23 when the first signs of dystonia, in my case spasmodic torticollis, appeared. I was living in León, Spain, working as an English language assistant in a secondary school by day and an English language tutor by night. All was well until one day, walking down a street, I felt a small movement, a tic, in the muscles of my neck. It didn’t bother me until it happened again, in particular one night when the movement of lifting a spoon to my mouth caused my head to jerk to the right. A few months later, I returned home to the island of South Uist in Scotland but throughout that summer, I saw various orthopaedic and neurological consultants in Inverness, Aberdeen and then Glasgow when I returned to university. That was September 1983. The last two years of exams were far from easy but thankfully I graduated with an Honours degree in Hispanic Studies in June 1985.
That was at a time when no one had access to the internet. Mobile phones as we now know them did not exist. Accessing information on a strange, unknown condition like spasmodic torticollis (now known as cervical dystonia) was almost impossible. The first piece of information I got was in a leaflet given to me by Professor Ian Bone, the neurologist who confirmed my diagnosis at the Southern General Hospital in Glasgow.
That leaflet gave me contact details for the Dystonia Society based in London. They encouraged me to tell my dystonia story in newspapers, on radio and television. From that I organised the first ever meeting of what became Scotland’s first self-help group for dystonia patients and their families. Then a Scottish Committee, a mix of people with dystonia and their carers, was formed to develop dystonia activity in Scotland.
Dystonia Europe’s first President and Executive Director, Alistair Newton, was a leading member of that group. I had come across Alistair by chance one day as we were both walking towards a bank to collect some money in Glasgow city centre. We looked at each other and laughed as it was clear we both had something in common – spasmodic torticollis. That was the start of a longstanding friendship with a man who has been a great support to me for the best part of 40 years.
I went on to work full-time in Glasgow for the Dystonia Society. With the invaluable support of volunteers, we raised awareness and funds across Scotland, ran a support line, produced a quarterly newsletter, bought a holiday caravan for members, lobbied policy makers and politicians for better dystonia services, and even founded the Glasgow Alliance of Neurological Groups (GANG) but after four busy years, it was time for me to move on. Living and working with dystonia 24 hours a day had taken its toll.
I had married Fiona in 1993 and we had a son, Daniel, in 1997. Fiona and Danny, and my wider circle of family, relatives and friends, have been incredibly supportive through all of my dystonia years. I’m very lucky to have had them around me.
It’s fair to say dystonia has affected every aspect of my life and, perhaps in a different way, that of my wife and son. While people can see the visible signs of it, my neck twisting to the right and an unnaturally raised right shoulder, they can’t see the invisible, psychological impact. For many years I had the capacity to block out a lot of the negativity, including pain, but that has changed. Now, every day is more of a physical and mental struggle.
Dystonia is a very lonely condition. Most people haven’t heard about it or understand it. It takes away one’s confidence and creates a sense of isolation and at times even hopelessness. The loss of control over so many aspects of “normal” life is difficult to accept. In many social situations especially, I get more anxious and nervous than I would be at home, for example at an event or in a bar or restaurant, or a public place like a shopping centre or a railway station. That may be due to overthinking in certain situations, leading to feelings of stress and unease that show physically in increased tension and tightening in the neck muscles. In the last year I’ve also found my neck now pushes down as well as sideways when I’m standing somewhere and trying to speak. My breathing gets blocked by the effort so I need a few extra seconds to calm things down. Sometimes I need a more comfortable place to be or to lean against for physical support, such as a wall. One thing that I have lost but would like to recover is the ability to drive a car. Six years ago, I chose to stop driving and that’s taken away a lot of my independence. In retrospect, that was a bad decision and I really need to find a way to drive again.
I continue to look for new ways to make daily living easier beyond medical therapies and treatments. Those treatments just don’t seem to work for me. I’ve tried so many pills for movement disorders, botulinum toxin injections (I was one of the first to receive those injections in Scotland), physiotherapy, acupuncture, hypnotherapy, yoga, osteopathy, massage, alternative therapies and so much more. In the 1990s, I even had the privilege of being treated at the National Hospital for Neurology and Neurosurgery in London by the most eminent movement disorder neurologist of his generation in the UK, the late Professor David Marsden. Then, more recently, I agreed to try DBS (Deep Brain Stimulation) but that didn’t go very far. The radiology team couldn’t get my head straight in the MRI scanner, even under general anaesthetic, so the scan process was stopped before it even started.
Around that time, an award-winning documentary on my life with dystonia was commissioned for the Scottish Gaelic television channel, BBC ALBA. The documentary was called Dystonia: Beatha air Fhiarradh (Dystonia: Life at an angle) and every now and again it becomes available on the BBC iPlayer, at this link https://www.bbc.co.uk/programmes/m000qrhr
I continued working all through my adult life until June 2024 when I retired from full-time employment. However, I remain active in various Scottish Gaelic organisations and in the Neurological Alliance of Scotland. I’m also a big football fan and lifelong supporter of Celtic Football Club. I try to get to matches when I can although the seating can be uncomfortable. If only I could afford corporate hospitality! Also, my wife and son are both excellent golfers so I’ve started playing the game. Unsurprisingly, my neck dystonia makes it more difficult to swing a club but I’m determined to find a way to make it easier for myself. A positive mindset has helped me through the last 42 years so one (lucky) day I might even beat the real golfers in the house!
Finally, if anyone reading this has found other effective ways of dealing with the daily challenges of life with dystonia, I’d love to hear from you. I can be contacted at dkmacphee@yahoo.co.uk The very best of health, happiness and good fortune to you all.
Donald MacPhee, Scotland
