Support group for people who are living with ‘the shakes’

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Hundreds of Dunedin people live each day with “the embarrassing, disabling shakes” – essential tremor.

The most common movement disorder, essential tremor (ET) effects 2% of the population and 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.

Since 2011, 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 meetings also include talks by specialists in neurological research, who help people understand the problem and discuss possible future treatments.

The group was established by Debbie Williams, who lived with severe ET for many years. Ms Williams died of an unrelated condition in July.

Otago ET group co-ordinator David Coulter said essential tremor occurred mainly in the hands, but could also effect the head and the legs.

“ET can be quite isolating,” Dr Coulter said.

“It becomes impossible to hold a cup without spilling and to use your knife, fork or spoon without spreading food on the table, or yourself, or on the floor.

“This is embarrassing and so you don’t go out to a restaurant and you turn down invitations from friends to join them for a meal.”

Many people lived with the condition for years, often unsure of the diagnosis, and received little support as the problem gradually worsened.

Essential tremor could also have a significant impact on people’s lives, as a recent survey of 76 people with ET showed.

Of major concern was that 15% of the survey respondents had to change their job or retire early.

Among the most prevalent daily difficulties were carrying liquids in a cup or dish (92%), writing (83%), drinking from a cup (78%), getting a key into a keyhole (55%), eating out (53%), putting on jewellery (50%), and personal grooming (50%).

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.

“One of the very useful things we do at meetings is to share the ways we have learned to cope with a particularly day-to-day problem – such as brushing teeth or using a camera,” he said.

The next meeting of the Otago ET Support Group will be held this Saturday, from 1.30pm, in the Bank of New Zealand upstairs meeting rooms – entrance off Moray Pl.

Speakers will include University of Otago researcher Prof Ruth Empson, who has studied cerebellar ataxias, including essential tremor, along with Selwyn Yeoman.

National ET Support co-ordinator Mrs Taki Fischer will also attend the meeting.

For information, contact Dr Coulter, phone (027)567-4269, email dcoulter47@gmail.com