On November 15, I returned to the National Institutes of Health (NIH). I have been there a number of times before: 1) to participate in the trial studying One Octanol, 2) to attend a conference on how non-profit organizations, involved in advocating for those with neurological disorders, can better collaborate with the National Institute for Neurological Disorders & Stroke (NINDS), 3) to participate in a trial to determine if there are any adverse effects on the rest of the body of Octanoic acid, 4) to participate in a trial to determine why people with ET frequently use two hands when holding something, and 5) to participate in a trial to determine the effects of alcohol on ET.
NINDS is well run, and the staff is both friendly & helpful. If you ever have an opportunity to participate in a trial there, please do so. You will find it to be a rewarding experience in more ways than one. As I have frequently said, taxpayers are definetly getting their money’s worth from what is being done at NINDS.
My visit on November 15 started with Dr. Dietrich Haubenberger testing my Essential Tremor. He used a scale that has recently been improved by a task force. The task force was created by the Movement Disorder Society to get a better understanding of Essential Tremor.
Next I participated in a trial of a new mouse developed by an employee of NINDS. Dr Haubenberger administered the test.
Finally, Dr Haubenberger and I discussed the current situation with Essential Tremor. He is in an ideal position to provide a good perspective. He works part time at NINDS. He is in the Neurology Department at the University of Vienna. He is also on the aforementioned task force. Being in Europe, he is close to what is happening there. Much is being done in countries like Spain & Italy as well as the rest of Europe.
In our discussion, he repeated what I am often hearing that there is no one Essential Tremor. Each patient must be treated individually based on their symptoms. He also said that he felt that NINDS would restart the Octanoic Acid study sometime in the future.
Peter Muller
Executive Director
