Essential tremor (ET) is the most common movement disorder, yet the October 2011 update of the 2005 American Academy of Neurology (AAN) Practice Parameter: Therapies for essential tremor, does not include new recommendations. No new therapies highlight the need for essential tremor research.
Responses to the Tremor Action Network & HopeNET web-based survey are a way that can help those with essential tremor be better served by more awareness of the most common movement disorder, and increase research funding for new therapies. The collection of information from this survey showed that using a non-clinical self reported survey can identify under-addressed issues that can be useful for ET patients, patient advocacy organizations, and clinical researchers.
Tremor Action Network’s online support group Tremor received a friendly introduction from Amy Madzelan, sharing her interest in medicine and research. A college student at Penn State, Amy had worked as a Paramedic for 6 years. She chose to write about the use of Propranolol for essential tremor after being assigned a technical writing project. Amy designed 9 questions, and asked the Tremor group members to help collect data for her paper by participating in a survey at SurveyMonkey.com. Google noticed the survey after 10 days. Amy not only provided the collection of information from her survey, but included an informative explanation on how beta-blockers work; in particular the non-selective beta-blocker Propranolol.
On behalf of Esther Baldinger, M.D. and Long Island College Hospital students under Dr. Baldinger’s supervision, Tremor Action Network invited website visitors, subscribers of the quarterly newsletter Spikes & Spasms, members of the Yahoo health group Tremor, Twitter followers of Tremor Action, We Move and Facebook advocates, and University of Miami patients of Fatta Nahab, M.D., to participate in a follow-up survey of people with essential tremor. The purpose of the survey was to try to learn more about this disease. Why does tremor begin in one part of the body for a particular person and in another part of the body for someone else? Do some people’s tremor progress to involve more parts of the body? How long does this take and why does it happen? Does tremor begin in the same way for all those affected in a family? Does the part of the body in which the tremor begins influence how the disease will progress? Do other diseases have an influence on how or whether the tremor worsens? Does gender, race, weight or education play any role? The benefits of this survey included a greater understanding of the possible causes and progression of essential tremor.
Participants agreed to have their responses collected and compared with the responses of others for the purpose of analysis. Individual survey responses are confidential and not associated with any one individual. Tremor Action Network and Dr. Baldinger thank survey participants for their participation and time in completing this survey.
Disclaimer: Information in this survey should not be taken as medical advice or endorsement of any treatment. Please consult with your own health care provider for any discussion or decisions related to your own treatment.
Essential Tremor (ET) is common, but many features of this movement disorder are unknown. Esther Baldinger, M.D. designed her first online survey to understand more about ET. A very important question is whether all ET patients have the same disease? Do people with one type of ET-gene look or act differently from those with another ET-gene? Does race or ethnicity play any role? Do substances in the diet or environment produce ET or influence progression? Do lifestyle choices like work, hobbies, sports, and even sleep make a difference?