St. Luke’s Support Group Notes – January 5, 2013

The St. Luke’s Support Group met on Saturday, January 5th at 10:30 AM, when Dr. Mark Hallett spoke to us via video conferencing.  Dr. Hallett gave us a good description of essential tremor confirming the idea that it is probably a group of disorders.  It affects different people in different ways as do the treatments. We learned that there is a very real difference in how the medications and treatments affect (or don’t affect) each individual.

Due to the nature of the condition, there is no reason to give up and not try another treatment just because the first does not work.

Dr. Hallett also told us of some of the research that is being done, including their ongoing attempts to get a pharmaceutical firm to make a prescription drug of Octanoic Acid.

He answered many questions and very graciously agreed to speak to us again in the future.

My own personal note at the end of the meeting was to remind everyone that the purpose of HopeNET is two-fold: To create awareness of ET and to fund research.

Despite snow flurries, the meeting was well attended.

Mary Fitzpatrick
St. Louis Support Group Leader

ET Research in Italy

On January 18, I had lunch in Rome, Italy with Alfonso Fasano, MD, PhD. He is currently at the Institute of Neurology at the Catholic University of the Sacred Heart in Rome. He is a movement disorder specialist who worked for a time with Dr Gunther Deuschl. Dr Deuschl is currently President of the Movement Disorder Society and is one of the foremost experts on Essential Tremor.

Alfonso & I discussed better ways to disseminate the results of research being done on Essential Tremor – to those who have it. He saw the benefit of doing so and enthusiastically wanted to help. He had some interesting observations. The principle one was that a number of people who have been told they have Essential Tremor, have Dystonia instead. They were misdiagnosed.

Dr Fasano is moving to Toronto within the month to continue his work there. Kathleen Welker of Tremor Action Network & I look forward to staying in touch with him while he is there.

Peter Muller
Executive Director

New ET Survey

I am frequently asked questions about Essential Tremor (ET). We know the following

  • No one fully understands what causes ET.
  • All treatments for it only address the symptoms. They neither cure the condition nor slow the progression of it.
  • One thing is becoming clearer is that there is no one Essential Tremor. Rather it is a family of conditions that varies as to symptoms, parts of the body affected, the progression of the condition, the age of onset, and the treatments used to address it.

Therefore anyone’s treatment for their ET must be unique and treated holistically. However this is currently very rarely the case. Based on the first survey done by Tremor Action Network and HopeNET, neurologists’ treatment of the condition was solely medication in the vast majority of cases. Yet a drug has still not been developed specifically for ET. Studies have shown that the drugs that are currently prescribed are only effective in about half the cases. Also there are commonly bad side effects with these drugs.

The survey which we have just done shows that some people with ET are successfully using alternative approaches. The comments made by responders to the survey show that many more would use these alternative approaches if they were aware of them and/or insurance covered them.

In my blog prior to this one, I outlined the presentation that I attended on Capitol Hill. The speaker emphasized the need for people using healthcare to be “informed consumers”. You have to be your own advocate to get the best possible care. That is especially the case with ET where most physicians have only a cursory knowledge of the condition.

Tremor Action Network & HopeNET will continue to provide information so that you can be an informed consumer and get the treatment that best helps you for your ET.

I want to thank Kathleen Welker of Tremor Action Network for all the work she’s done with the surveys.

Peter Muller
Executive Director