Jackie's Journey with Essential Tremor
Jackie shares her story about living with tremor as a dance teacher.
At the age of three my mother took me to a dance class. From that day dance became my life, and I knew from an early age it would be my career.
I left school in 1962 to work as a dancer and after taking my first teacher’s exam at 16, I opened my own dance school in 1964 teaching ballet, tap and modern dance.
During my 20s a tremor developed in my right hand, which was finally diagnosed as what was know then as Benign Familial Essential Tremor.
I often hear people with ET mention how they hide their tremors, thinking others won’t notice. That was true for me, too, when I was teaching. I would try to hide mine, thinking parents wouldn’t notice. With the benefit of hindsight, they probably would have noticed my tremoring hands; I wonder what they must have thought was the cause. It was only when making the decision to stop teaching and explain to parents and pupils the reason why, did I start talking out about the disorder and have continued to do so to this day. It has turned out to be such a relief in the long term.
During my early 50s a ‘no-no’ head tremor was diagnosed. The hand tremors progressed and became more noticeable on activities that up until that point had been manageable. I then had to make an extremely difficult decision; I stopped teaching and took early retirement in 2004. At the time it felt like the end of the world, as dance had been my whole life.
In 2012 Essential Tremor was diagnosed in my legs and jaw, and since then I have also been diagnosed with Genetic Haemochromatosis (GH). In order to manage my day, I practise a combination of meditation, yoga, tai chi and relaxation first thing in the morning. Fatigue is a symptom of ET and GH, so it is important for me to pace my activities each day; this helps keep the tremors more under control, as too much activity or exertion can increase them. Being mindful and in the present moment is also invaluable to me. However, there are days when my tremors have a mind of their own and are a real challenge, especially when applying makeup, eating, drinking or writing, and the leg tremors can affect my yoga, but that doesn’t stop me adapting the pose if need be.
At the beginning of 2014 I discovered March was ‘ET awareness month’ and since then I have been appointed the Support Group Coordinator for the NTF, and taken every opportunity to raise and spread awareness of tremor, through talks and events. Details of these and my support group, Sutton Shakers, can be found in the events section of the NTF website.