Shaking is no laughter matter for Derbyshire twins with neurological condition

Jackie Farrell had to give up her career as a dance teacher when her shaking got too severe – something which will resonate with others who have had to sacrifice the things they love because of an uncontrollable tremor.

Jackie (76), Oscar and Cristian (28) are among more than a million people in the UK who suffer from Essential Tremor. It’s one of the most common neurological disorders which can make people’s hands, head, trunk, voice or legs shake rhythmically.

But while it may be one of the most common, it is also the least talked about and can lead to loneliness and social isolation for those living with the condition - afraid to go out because onlookers often presume they are drunks or drug addicts.

Oscar was only 14 when his tremor started and his hands would start shaking for no reason. When he was older he would occasionally spill his pint over himself in the pub: “I didn’t think it was overly serious so I hadn’t done anything about it, then in the pandemic it started progressing. During lockdown if you spilled coffee at home you didn’t really think about it. But when we were allowed out again and I went to a friend’s house and spilled a cup of tea all over myself I was mortified and so embarrassed.”

It was an appearance by Coronation Street actor Rob Mallard on This Morning that changed things. The actor was visibly shaking and appeared on a subsequent programme with a doctor to explain that he had Essential Tremor. That’s when Oscar decided to look into it and after 12 years got the diagnosis.

Cristian’s tremor started later in his mid-teens and like Oscar he didn’t really worry or do anything about it. It was only when his brother was diagnosed that he thought “That’s what I have got too.”

Jackie was diagnosed in 1974 when she was in her late 20s at a time when there were no internet sites or societies to rely on for information. For years the tremor in her hands was relatively mild and allowed her to run her own dance school teaching classical ballet, contemporary dance and tap.

For 27 years Jackie managed on her own until she discovered the National Tremor Foundation in the UK and at last met people with the same condition. Sadly within three years the tremor had progressed to her head and her legs and reluctantly she had to stop teaching: “Anyone who has had to give up or change their career due to tremors will know how devastating that can be.”

Then in 2010 Jackie heard about Essential Tremor Awareness Month and her life changed: “From then on I started raising awareness of ET to help and support others with the same neurological disorder. Not long after I became National Tremor Foundation Support Group Coordinator and continue to this day raising awareness wherever I can.”

That support was particularly difficult during lockdown, but thanks to the internet she has set up and hosted a large number of weekly on-line groups where people living with Essential Tremor– and those who care for them - can exchange tips and experiences and get support when they need it most: “I’ve probably done 90 sessions in three years and it’s become a way of life for me. We can sit down and have coffee and a chat and show people they are not alone.

“For most of us we have probably been through a time where we have tried to hide the tremor through embarrassment. But we can also try to find ways to help us manage it. For me I use mindfulness, meditation, tai chi, Qi Gong to help calm my nervous system.”

Like Jackie, Oscar and Cristian know the tremor will get worse: “I had to get a bit tough with myself,” said Oscar. “I have it for the rest of my life, but I don’t want to just sit at home, I have got to find ways of dealing with it. I know it is going to be difficult, but I’m not alone I am working with the National Tremor Foundation to spread information. I don’t want people to feel trapped and lonely like I did.”

Cristian too is helping to get the message out there. He said: “It’s a relatively hidden disability – if people have Essential Tremor they don’t like to go out in public in case they embarrass themselves.”

For more information check out the National Tremor Foundation website www.tremor.org.uk where statistics show at least 5 per cent of all cases of Essential Tremor commence in childhood. The site gives information about the next Zoom support session is on May 25th and you can also find information about the condition, ways of managing it, and inspirational stories.

Essential Tremor is considered one of the most common neurological movement disorders and is estimated to be eight to 10 times more prevalent than Parkinson's disease. People exhibit a rhythmic trembling of the hands, head, legs, trunk and/or voice. It can afflict persons of any age, gender and race and in the vast majority of all cases it is inherited. While more commonly noticed in older individuals, essential tremor can begin as early as birth.