Support for tremor sufferers

Dunedin woman Debbie Williams says people with Essential tremor often withdraw from life because they are ashamed.

With support from University of Otago psychology researchers, she is setting up a Dunedin support group to encourage sufferers back into the community.

Mrs Williams (72) said Essential tremor - a condition causing uncontrollable shaking sometimes misdiagnosed as Parkinson's disease - often prompted people to stop socialising out of embarrassment.

"Having Essential tremor is nothing to be ashamed of and because of its visibility we can't hide it."

Unlike Parkinson's, it was not a disease and not life-threatening. However, the effects on a person's life could be devastating.

There was no cure, the cause was unknown, and there was a serious lack of research funding and recognition for the condition.

Equipment was available to help people with everyday activities made difficult by the condition, and a support group could help ensure people had as much help as possible. Members could exchange tips for coping and making the most of life.

The group would also be a source of participants for Otago University research, she said.

Mrs Williams had had the condition since her 20s, although it had become worse as she got older.

She did not know how many people were affected in Dunedin.

Otago University Associate Prof Liz Franz and master of science student Alan Woods would speak about their research at the group's inaugural meeting next week.

Mr Woods said Essential tremor was not well understood.

"We do not really understand its neural basis. Nor do we know whether there are other motor and/or cognitive problems associated with ET."

Mr Woods tested a group of Auckland sufferers earlier this year, and was recruiting Dunedin sufferers.

• Essential tremor support group inaugural meeting; Dunedin Hospital, September 17, Dunedin Hospital Octagonal Room, 1.30pm-3.30pm.

- eileen.goodwin@odt.co.nz