April 2014 - HopeNet Musings

April 2, 2014 — A handful of members from the Essential Tremor Support Group that meets monthly at Leisure World in Silver Spring made a trip to Capitol Hill to meet with Congressman Chris Van Hollen’s Legislative Assistant for Healthcare, Erika Appel, to discuss concerns over quality of life for people with Essential Tremor, a neurological condition.

E.T. can present with hand tremors, voice tremors, loss of voice, head tremors, and leg tremors. Prudy of Ashburn attended with her sister, Sara, of Derwood, in order to speak for Sara who cannot talk because of the condition. Sara began having a wavering voice years ago and as the condition progressed she lost her voice completely and faces not only social isolation but real danger from not being able to communicate. Another attendee was Thom who came with his wife Mary so she could speak to how it is for a family member supporting the person with E.T. Thom had Deep Brain Stimulation, brain surgery that involves a pacemaker placed below the neck that helps control the electrical signals and calm the tremor. Unfortunately for Thom, the electrical wire placed in the brain is close enough to the speech center to have impaired his speech which is slurred as a result. Charley, another member, lost his job last December when he was asked to take early retirement and suspects that his tremor may be in part to blame since he was an ESOL teacher who taught writing, which is of course quite difficult when your writing is illegible from the tremor. And lastly I attended, a 50 year old woman, and experience like many others the anxiety-like physical and psychological effects of the tremor and its negative impact on work and social life. As the condition progressively gets worse, I fear for my future in terms of unemployment [my excessive shaking at job interviews does not likely help me get the job] and disability [since the tremor is not bad at all times, I certainly would not qualify for disability, but in situations such as job interviews it is truly a disability].

Prudy spoke and gave some perspective on E.T. in the U.S. She recollected statistics from several years ago that approximately 1 million people have Parkinson’s Disease whereas E.T. affects about 10 million. Most in our group think people with the condition do not know they have it and attribute their symptoms to anxiety or nerves. It has been well-established that having an alcoholic drink helps many with this condition, that the octanol in alcohol helps diminish the tremor for a short time, and NIH has conducted research studies to isolate the octanoic acid from alcohol for use in pill form. These studies are years old, and there is frustration among this group that development of pharmaceutical octanoic acid is stalled. While there is the newer focused ultrasound treatment, and Sara mentioned she thought there were 9000 on the waiting list, we lamented over the lack of knowledge among neurologists about our condition, and about the complete lack of development of any drug specifically made to treat E.T. The few medicines that are prescribed were developed decades ago for other conditions like high blood pressure and epilepsy and happened to alleviate the tremor for only some people. It was encouraging that Erika Appel wanted to look into the condition further and wondered why a drug had not been developed if there is a market of so many people who have the condition.

The next thing for HopeNET is the May 7th congressional briefing on E.T. sponsored by Congressman Moran’s office.

Lisa Gannon, Silver Spring Support Group Member

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.

Shaking On Capitol Hill

Personal Stories – Doris, age 77