The most common movement disorder in New Zealand, essential tremor (ET) affects 4% of the population over 40 years of age — meaning up to 99,560 people are living with ET.
Essential tremor can range from mild to severe and disabling, there are no specific tests for ET and no specific treatment. In about 50% of cases there is a family connection.
Simple actions such as carrying a cup of tea, eating and drinking, using a camera, eating out, putting on jewellery, using a keyboard or mouse, applying makeup and cleaning teeth can all be a challenge.
With international Essential Tremor Awareness Month coming up in March, the Otago Essential Tremor Support Group is keen to highlight the prevalence of the condition in the community, and to spread the word that peer support is available for those living with ET and their loved ones.
Formed in 2001, the Otago Essential Tremor Support Group has offered people living with the non-Parkinson’s neurological disorder a forum for sharing experiences, developing friendships and learning how to cope with difficulties.
Group chairman/convener Dr David Coulter said the group came together every six months to chat, keep abreast of the latest research into ET and hear from specialists in neurological research.
"These people are invaluable, as they can help us understand the problem and discuss future treatments," Dr Coulter said.
"ET can lead to social isolation, so the meetings are also a good place to socialise and to share ways in which different people have solved day-to-day issues," he said.
"It’s really good to have the chance to get together with people who are having similar experiences."
The New Zealand Essential Tremor Support Group national co-ordinator Taki Fischer also attended one of the meetings each year. The next meeting of the Otago Essential Tremor Group will be held on April 18.
The group was established by the late Debbie Williams, who lived with severe ET for many years and died from an unrelated condition.
To honour her friend, Prof Louise Parr-Brownlie, of the University of Otago Anatomy Department, relatively recently became a member of the Otago Essential Tremor Support Group.
Her own research focuses on improving movement for people with Parkinson’s Disease and treating neurological disorders.
"It is important to me that we can find ways to raise awareness of essential tremor in the community," Prof Parr-Brownlie said.
"We hear stories of people who have gone years and years without a diagnosis of the condition, which can be life-changing, debilitating and isolating.
"Often people end up turning down invitations and becoming isolated, as they find it difficult to go out in public."
Another concern was that about 15% of people living with ET had to change their job or retire early.
Dr Coulter said the support group would like to reach more people in Dunedin and Otago living with the condition, because it could offer valuable assistance in daily life.
• The next meeting of the Otago Essential Tremor Group will be held on Saturday, April 18, from 1pm in the Dunningham Suite, 4th floor, Dunedin Public Library. People experiencing ET, their friends and family are welcome to attend.
For information, contact Dr Coulter, phone 027 567-4269, email dcoulter47@gmail.com or phone Jackie Jones on 029 200-6743, email jackiejonesnz@hotmail.com
