Personal Stories – Deb, age 73

Deb’s ET began about 5 years ago. Before retiring from the Navy she had an encounter where the updraft from a landing helicopter picked her up, flipped her over and dropped her on the ground, 3 times.  The ET started about a year after this as a slight tremor in her left hand, her writing hand. It spread more recently to the other hand, and the left hand has gotten worse to where people notice it now. The more she concentrates on not spilling, she spills, ie, when eating a bowl of soup. The soup does not make it to her mouth unless she uses two hands. Deb sings and also notices the tremor impedes her holding sheet music in her hands.

She has hit her head about 5 times in life and has had 3 concussions. Long before the helicopter accident she was in a terrible car accident, in a stopped car that was hit by a car moving at 85mph and threw her vehicle 50 feet. Deb had two compressed discs in her spine, the cranial and lumbar.  However, she definitely attributes the helicopter accident to the onset of her tremor. She went to her neurologist for the tremor about a year ago when it became more noticeable and went on Primidone. She continues to take it but finds it doesn’t seem to work.

She doesn’t recall anyone in her family having had a tremor. She has had her frustrations from ET, such as her writing became so bad that when her bank once asked her to write to get money out, the amount she wrote out was not even legible. Also she tires more easily because of trying to hard to control the tremor.

Before Deb retired she worked in a laboratory and did precise work that required her to be steady. She was thinking of going back to work in the medical field she was trained in to make some money but says it wouldn’t be possible now with her tremor because it makes her too unsteady.

In term of coping, she finds wine calms her tremor down so she will have some at dinner, 3 champagne glasses full. But while wine works, whiskey does not. She has started to do stretching exercises and wants to try Tai Chi. The idea is to stabilize the impulses from the thalamus. She hopes NIH will have their octanoic acid study resume again so that medicine will be made available that mimics the effects of alcohol on tremor without the drunken aspect.

Interviewed by Lisa Gannon
Silver Spring, MD Support Group Member

Other personal stories:


We need your help!

We need your help! We want you to help us by contacting the nearest district office of your Congressman or Senator and then meet with them to personally discuss how ET affects you or someone you know.

We have found that the personal touch really helps in these conversations versus the rote “facts” about ET.

Please get in touch with us so we can discuss this further and provide guidance to you on how best to contact the offices.

Please share with your support groups, etc. Thank you for your participation.

Congressional Briefing May 7, 2014

On Wednesday, May 7, we conducted a briefing to staff members of both houses of Congress. A representative from NIH also attended. The speakers were (1) Claudia Testa, MD, PhD, Associate Professor of Neurology, Virginia Commonwealth University, Associate Director of Clinical Research, VCU’s Parkinson’s & Movement Disorder Center, Joan Massey Chair in Clinical Parkinson’s Disease, (2) Sara Donaldson and Prudy Bradley, sisters with Essential Tremor (ET) that are part of a family in which all 12 siblings have or had ET, (3) Soren Lowell, PhD Assistant Professor, Department of Communication Sciences & Disorders, Syracuse University, and (4) myself.

Dr. Testa provided an overview of Essential Tremor (1) what its are effects – the problems its causes for those who have it, (2) what is known about ET, and (3) what we can do to help those with ET. Prudy and Sara then got up. Sara’s voice tremor is so bad, she can’t speak (she has a pen & pad of paper with her all the time). As a result, Prudy spoke for both of them and related how ET had impacted the quality of their lives. Dr. Lowell is currently conducting a study, funded by NIH, on the impact of Octanoic Acid on Voice Tremor caused by ET. I concluded the presentation by relating how I was fired from a senior management position as a direct result of my voice tremor.

There was real interest on the part of those who attended. A number stayed afterwards to learn more about Essential Tremor.

Peter Muller
Executive Director