Donald tells his story of living with neck dystonia (cervical dystonia) and how he continues to challenge himself to raise awareness of the condition.

Neck dystonia is characterised by continuous or intermittent muscle contractions which cause abnormal, often painful, repetitive movements of the neck and head. The movements can lead to the head and neck twisting (torticollis) or being pulled forwards (antecollis), backwards (retrocollis), or sideways (laterocollis).

I’ve had cervical dystonia for 37 years. Because of that I’m personally invested in dystonia. I’m always looking for answers and to find ways to cope better with its impact on my daily life.

I try to be as positive as possible and keep my mind occupied with a wide range of interesting activities. I’ve never stopped raising awareness or looking for solutions since I was first affected in my early 20s but in those early years I was fitter and could do a lot more fundraising and awareness raising. Now that I’m in my early 60s I’ve still got something to offer and I’ve decided I should do more work for dystonia. I’ve still got a full-time job but I feel I can do a bit more with my time to help others.

Life is short and we all need to make the most of it while we can. My way is to challenge myself so that I can do something that helps people feel better about themselves, or makes the wider population more aware of dystonia, or helps raise funds to support Dystonia UK or encourages researchers to invest time and funds in solutions that alleviate or cure dystonia.

I’ve spent long enough thinking of what to do and finding excuses not to do them, to be fair probably because I was having a bad dystonia day. Now I just do those things, especially what I used to enjoy when I was younger like football, golf and running. Given the movement restrictions on my neck and shoulder, sport is far from easy. Right now, I’m nursing a calf injury after my first football match in 4 years but I’m quite happy as I really enjoyed it. As an aside, it was also filmed as part of a documentary for BBC ALBA which is now fairly close to completion.

The other major reason for my fundraising is my sister, Margaret. A couple of years ago, she raised about £3,500 in running the York Marathon for dystonia. That was a fantastic achievement. Then, last summer she was diagnosed with cancer. She battled very bravely against it but passed away, far too early, in February this year, at the age of 53. She is my inspiration for my fundraising and I’ll never forget her or what she did for all of us involved with dystonia.