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