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.