Mum reveals life with ‘shaking’ spasms condition
A MUM has opened up about the rare neurological condition that leaves her head shaking so uncontrollably she can’t sit still and watch TV.
At the age of 45, Gill Ainsley had a hectic job at Newcastle University and worked away from home five days a week. When her eyes started to clamp themselves shut, she initially put it down to stress.
Gill, from Blyth, had no idea it was the first sign of dystonia – a rare neurological condition which causes painful muscle spasms.
Over the years it has spread to her neck, jaw and shoulders, and it means her head can shake uncontrollably. But she refuses to let it stand in her way.
Gill, now 60, said: “I noticed one eye kept closing as if there was something in it. I thought my eyes were just tired and needed to be refreshed.
“It happened at a very stressful time in my life. I was working at Newcastle University and travelling back to St Annes in Lancashire every weekend.
“My two boys were both getting ready to leave home and I had a new job.
“We were also trying to sell the house at the time, and we had two deaths in the family.
“All the major stress factors were happening at once.”
As the months went on Gill noticed the other eye had started to close.
“I couldn’t read or watch the TV,” Gill said. “I took some sick leave from work and went to my GP.
“He put me on sedatives and said it was stress. They didn’t do anything at all. I started to research what was happening myself and came across dystonia.”
Dystonia affects around 70,000 people in the UK and is sometimes linked to conditions such as Parkinson’s and cer
ebral palsy. In Gill’s case it occurred on its own. Over the next five years she had to hold one eyelid open so she could catch the bus and go shopping. But life wasn’t the same as it had been before.
“At first I had to force myself to leave the house,” Gill said. “I spent a lot of time walking into doors and door handles and I permanently had bruises on my hips and arms.
“One time I was out with my husband John and I knocked into someone and said sorry. John told me I hadn’t walked into them, but they had walked into me.
“I think that is when I began to accept what I’ve got, and realised most people are too bothered about themselves to give others a second glance. When I started to accept it, that’s when I got my life back.”
Gill, who lives in Blyth and has two grandchildren, now helps to run a charity called ADDER, which stands for Action for Dystonia, Diagnoses, Education and Research, and is sharing her story as Dystonia Awareness Month begins.
Every 12 weeks she has botulinum toxin (Botox) injections at Walkergate Park Hospital to ease the symptoms, and her eyes have been in remission for a number of years.
She said: “These days it doesn’t have a huge effect on my day-to-day life, other than the fact I’m in pain a lot of the time, but it doesn’t stop me doing anything.
“One thing I’ve found is I have to always be busy – I can’t just sit and relax because my head shakes so violently.
“I wouldn’t just be able to watch TV, I always have to be doing something else, so I have to watch TV and knit. Going to the cinema or the theatre is very difficult.
“I used to be embarrassed of having a shaking head, but I’m not anymore. It has become so much a part of me and it feels so normal that I sometimes look at other people and ask myself ‘why’s their head not shaking?’.”
Find out more about Dystonia Awareness Month at actionfordystonia.co.uk
I used to be embarrassed of having a shaking head, but I’m not anymore. It has become so much a part of me