When Bran Koseda was twelve her mum noticed her back ‘looked like a washboard’. This was the first sign of a dystonia that took more than 15 years to treat effectively. Despite this, Bran was determined to build a professional music career and played through her pain to achieve it. Here’s her story:
“The first symptoms of my dystonia appeared when I was 12. My Mum said that my back looked like a washboard. The muscles were so tense that there was no give in them at all. I developed a strange bouncy walk with my shoulders gravitating upwards. As a 12 year old into heavy metal and wearing Doc Martens, this used to cause me problems as people thought it was a bravado act and that I was looking for trouble.
I was taken to doctors but my symptoms were dismissed as psychological and I was referred to a psychiatrist. When I was in my mid-teens, I had an attack of serious spasms – my head was trying to twist down my back. By the time, I got to the doctors my body was arched like a crescent moon. People were staring at me and looking scared. However, they still didn’t diagnose the problem. Over the year, they suggested many different causes for my symptoms including a bad reaction to my tattoos!
Despite my dystonia, all the way through my teens I was playing music. I loved the bass and started playing the guitar: heavy metal, rock, jazz. Just playing. My wildest impossible dream was to play guitar live. But when I was 22, I went to see a rheumatologist who told me I’d never play the guitar again.
However, I persisted. I worked a specialist guitar teacher who taught me to hold the plectrum in a way to cause the minimum amount of strain on my muscles. Playing the guitar was like riding through the pain barrier. After a couple of hours, I would be in agony. It was worth it as I achieved my goal of becoming a professional musician and touring Europe.
When I was 27, a new locum came to my GP practice. She referred me to a neurologist and I finally received a diagnosis of dystonia. By this time, the diagnosis wasn’t a surprise as I’d learned about dystonia a few years before but I hadn’t wanted to admit to myself that this was what I had. But it was a grim hour when I first saw the diagnosis written down.
The seizure-like attacks continued and none of the treatments made much difference. I was in agony. Finally I told my psychiatrist I couldn’t cope any more. She specialised in hard-to-diagnose cases and talked to some neurologists. As a result, she decided to take on my case. After trying some other medications, she finally prescribed L-dopa. At first, I didn’t notice anything major – but then I noticed that the muscles in my back were no longer locked in place. Things improved and it felt like someone had put my brain back in my head. The mental relief was unbelievable. When I met my Doctor the next week, we grinned at each other:‘Oh wow, it’s worked’.
It’s not a complete cure – I still experience pain. For my music, I’ve had to switch from playing the guitar to singing. For years, I tried to hide my symptoms but now I talk openly about my dystonia. In September I’m playing at Alchemy Festival. I hope my story will help others. If anyone has to listen to the doom and gloom of being told they can’t do things. Anyone can achieve what they want – they just have to keep plugging away.”
Bran was ultimately fortunate in that her dystonia proved highly responsive to levodopa. This does happen in some rare cases – usually when the dystonia has started in childhood. However, unfortunately, most dystonias don’t respond in this way.