How I embraced my spasms and stopped relying on alcohol
Scot inspires others with blog from Australia on the rare condition that causes her to twitch involuntarily
AT FIRST glance she looks the picture of health, blogging regularly online about her idyllic life in the Australian sunshine. But Yasmina McGlone lives with a debilitating condition that left her binge drinking in a bid to cope.
The 25-year-old Scot suffers from a rare movement disorder that causes involuntary jerks – and it has plagued her life.
Everyday tasks such as eating or putting on make-up can be a struggle. Sometimes the spasms can be so violent that strangers think she is having a fit and will rush to help her.
Miss McGlone’s condition is called myoclonic dystonia, which induces sudden jerks in the body. It first appeared when she was just three years old.
Some years later, she found solace in alcohol, which can help to ease the symptoms. But once she started having 15 alcoholic drinks a night she realised that she needed to turn her life around.
So she left her home town of Denny, Falkirk, with a one-way ticket to Australia, and is now embracing her condition.
Her online blog, Living with a Jerk, has helped her to raise awareness and break down negative stereotypes about people with disabilities.
‘My mum began noticing my jerk when I was about three, after she saw my arm twitching when I was colouring in,’ she said. ‘Then I used to get into trouble at school because my jerks meant I could never sit still on the chair at my desk.
‘My teacher just thought I was a naughty and fidgety child. I would also struggle with exams throughout high school because my arm would be jerking so much that I’d never be able to finish in time. ‘Of course, as a teenager, you just think, “Why me?”.
‘I can’t lie and say that I didn’t find it frustrating, or that it didn’t upset me.
‘I lived my life trying to hide the jerk, but it would come out at the most inconvenient times and it would make me feel extremely down for the rest of the day.
Iblamed myself and it became my obsession to try to get rid of the jerk. But no matter what I did, or how hard I tried, or who tried to help me, it still hung around and there was nothing I could do about it.
‘Hating yourself can really take its toll and I was ready just to give up.’
As she got older, Miss McGlone found short-lived escape in wine and vodka, but this became an undesirable habit.
Alcohol can improve the symptoms of myoclonic dystonia, and the syndrome is often called alcohol responsive dystonia.
Around one person in every half a million is affected by the condition, which is hereditary and caused by mutations in a gene which is important in the function of muscle fibres.
‘I started to depend on drinking, smoking and partying to feel temporarily happy,’ Miss McGlone said. ‘But whenever I was alone, I couldn’t mask how sad I really felt.
‘I’d go out two to four nights a week and just binge drink.
‘Usually three drinks would help ease the jerk, but I kept drinking throughout the night – at least 15 drinks a night.
‘I drank vodka a lot and would usually share a bottle with a friend or have a bottle of wine before leaving the house.
‘I knew I couldn’t go on like this for ever and I didn’t want to be an alcoholic.
‘I knew I wasn’t going to find the answer at the bottom of a vodka bottle.’
Miss McGlone also tried various medications, but found the side-effects intolerable and stopped taking them. In a ‘desperate attempt to find happiness’ the young woman seized the chance of a one-way ticket to Australia five years ago, when she was 21.
She moved to Melbourne, where she now raises awareness of the condition.
‘I needed a fresh start, so in 2013 I boarded that plane to the other side of the world and never looked back,’ she said.
Besides working as a nanny, she is also studying for a diploma in community services and hopes to eventually work with people who have disabilities.
The Dystonia Medical Research Foundation defines myoclonic dystonia as a genetic condition that causes sudden, brief, shock-like jerks, most frequently affecting the central part of the body, including the shoulders, arms, neck, and torso.
Miss McGlone said doctors were initially baffled by her random jerking movements, which no one was able to explain.
After ‘feeling depressed’ about her condition for most of her life, she turned her life around with a positive mindset.
Her social media posts show pictures of her on the beach, hiking in the countryside and working out at the gym.
However, she uses her Instagram account to discuss her condition.
She has explained how it makes her feel like a ‘puppet on a string’, and included videos that show just how hard her life can be – such as trying to drink coffee from a mug while the muscles in her hand cramp up.
She said: ‘I am happier than ever in my own skin. I still live with the jerk, but it doesn’t rule me. There are a lot of misconceptions about people with disabilities that I’m trying to break down.
‘People often say to me, “But you don’t look like you have a disability”.
‘There is a warped perception in some people’s minds of what constitutes a disability.
BUT the truth is that there is no one type of disability and, really, we should be focusing on what people’s abilities are instead.
‘Now I’m hoping to inspire people around the world and raise awareness about dystonia so that one day there might be a cure.
‘Everyone struggles, whether you have a disability or not.’
She urged others to remember that there is ‘always light at the end of the tunnel’.
‘It is so important to learn to embrace our differences instead of fighting them and have faith that people will accept you for you,’ she said.
‘My uniqueness has created amazing opportunities for me that I would never have had without the jerk.
‘I absolutely love my life and I wouldn’t change a thing. I feel blessed.’