Personal Stories – Doris, age 77

Her age of onset was in her early 40’s. She tremored in both hands and after some time it seemed to go away but then came back in her head and then in her hands again. She was diagnosed in her late 40’s by a neurologist and sought a second opinion from a doctor at Johns Hopkins. She remembers the neurologist noting she complained of migraines, he asked if she drank coffee and was told she needed to wean herself off caffeine to see some improvement.

Doris’ son has ET and he had the exact same experience of it going away and coming back that his mom did. He is a welder by profession and feels the tremors when he puts his heavy helmet on. When Doris was in her mid-50’s she went to Hopkins because the ET started to worsen. It took her 6 months to get an appointment with a particular doctor. She started Propranolol at a low dose which worked but was depressed as a side effect, so she stopped. She tried Topamax and Mysoline, but both were not a good fit for her. Mysoline made her “out of it” and confused so she stopped. Doris is not taking anything now for her ET but does have Propranolol to take if she anticipates a stressful situation … such as an experience where her head shook badly when she went to make a presentation to the county about a building being constructed.

She has some Dystonia in her neck as was diagnosed with this movement disorder a few years ago. Because of the way her muscles contract she always sits on the right side near the back when people are assembled so she can look left and won’t distract people. It does not bother her that people look at her and her shaking, she’s gotten used to it. There have been occasions however when she has been asked something and she said ‘yes’ but her head was shaking ‘no’.

No one in her mother’s or father’s family that she knows of has ET. Her son however met his grandfather’s sister’s great granddaughter for lunch with Doris and they discovered this relative has it herself.

At an ET support group meeting she heard that if you have 4 kids (and Doris has 4 kids), 2 of them will probably have ET and as for the two that don’t have it, their kids will probably not have it either. Doris feels this supposition was dispelled when she met a couple in her support group who have one daughter with ET and one without it and the one without ET has kids who have ET.

Doris moved into her house 47 years ago and there was a problem with crickets in the basement, so she put down the pesticide Chlordane around the perimeter of the house. What she knew about Chlordane was that it stays .. you will probably never have termites [or in this case, crickets]. Chlordane has since lost approval for use in part because of its effects on the nervous system. She remembers the Chlordane splashing onto her Keds tennis shoes and that her kids slept in a bedroom in the basement; she wonders if it could have been a factor in the development of her ET and that of her children.

She has had balance issues in the last four years and goes to the pool for exercise. Her tremor occurs while she is carrying something, not afterwards, and also anytime there is an uncomfortable stress. Her tremor is constant whereas her daughter’s is more episodic and comes and goes away.

See also: