Jonathan Stone was diagnosed with SCA17 ataxia (spinocerebellar) in March 2017. He tells us that music has helped him come to terms with his diagnosis, examine his fears and remain buoyant.
Coping mechanism
“I read on a fact sheet that people with SCA17 ataxia rarely live beyond 60; well, I’m 59 and rather frightened. I am however, a musician and this keeps me focused. When I was diagnosed with ataxia I joined Facebook groups; it’s beneficial to surround yourself with people who are in the same boat. Needless to say, ataxia can be depressing. It’s progressive and currently there is no cure. Here is how I get through each day in the most optimistic way possible – I have my music to thank for that.
A different journey to you
If you join online forums, you’re going to find humour and depressing comments all at the same time. This is because no two ataxia stories are the same; our symptoms may be similar but our stories are different. Everyone is on their own journey and we cope in different ways.
Take advice
There is an expectation for doctors to find this miracle cure. Yes, it would be wonderful, but it may not happen. What is the point in investing all your time and hope into an unpredictable cause? We should work with doctors but try use acceptance, too. If the doctor tells you to exercise and diet – do it! It is better than no treatment at all. Doctors are experts but so are you, your family and those around you who help. Find yourself a passion or hobby and that too, can be a treatment.
The roots of music-playing
I played classical guitar as a child, bass guitar in a rock group during teenage years, then I studied theatre and dance. Afterwards I got into singing and making music with other dancers and performers in New York and London. I like working with people; hearing their voice and then building around them.
Future plans
I’m planning a concert night now that incorporates my diagnosis, use of a walking stick and changing attitudes towards disabilities. I will be expressing through words, whistles, hums and even an invented language! I’m currently waiting for funding because I think all artists should be paid – and that includes behind the scene staff.
I would hate to suggest that anyone can get over this condition by putting their mind to it. However, I do believe whatever your condition is, mindset is an important thing. In some ways, I am lucky because my condition doesn’t affect my motor control. I do walk with a limp and sometimes use a stick, but I can still follow my passion which is making music. Therefore, I want to do as much as I can and make something of it. For me, making music is a way of coping: practicing a musical instrument, working on balance and clear speech strengthens what ataxia disintegrates. Having a hobby can distract and take away your attention from dwelling on the negative.”
