Month: May 2012

Essential Tremor Meeting Saint Louis, MO

Photograph of Peter Muller speaking at St. Louis meeting.
Peter Muller

Peter Muller made a presentation to the two St. Louis Support Groups at St. Luke’s Hospital on May 19th. It was well attended. Due to a notice in the newspaper, several people who had not previously been to one of our meetings came. Also there were Caleb Eaton and his father, Robert. Please note the accompanying article on Caleb.

The presentation centered on the symptoms and treatments for Essential Tremor and what is happening in the research world to address these. Peter also spoke about HopeNET and what it is doing to increase awareness of Essential Tremor. There were some very good things that came from the meeting.  My neurologist called to tell me that one of his patients told him that she had learned so very much from Peter’s talk.  The Doctor then called me to get the name of the Doctor who could tell him more about the Focused Ultrasound System (ExAblate 2000).  This leads me to believe that some doctors are as interested in learning more about Essential Tremor and its treatments as those of us who have ET.  Several of the regular members of the group phoned me after the meeting to tell me how much they appreciated the meeting.

Also, Peter’s visit and his talk encouraged the people in attendance to know that there is hope for development of more  and better ways to treat Essential Tremor, and that it is the responsibility of each of us to participate in raising awareness about ET in order to promote funding for research.  In summation, I believe that the presentation energized our group and made all of us aware that there really is hope…..but that we must all work for success!

Mary J Fitzpatrick
HopeNet Board Secretary
St. Louis, Missouri

Caleb Eaton

Photgraph of Caleb
Caleb

Caleb Eaton, the 13 year old son of Robert and Kathleen Eaton has had Essential Tremor since he was 2 years old.  He just completed the 6th grade and is doing well.  Kathleen has made great effort to learn about ET and to take what she has learned to Caleb’s teachers, counselors and to other people at Hazelwood West Middle School.  The school is attempting to get some technology that will help Caleb with writing, etc., when he starts 7th grade next fall.

Because of Kathleen and Robert’s efforts, and Caleb’s strong will to succeed, he is doing well in school and is happy to know that this picture of him and this information may help other young children know that they are not alone and that they too can triumph over ET.

We, here at HopeNET are so pleased with Caleb’s progress and wish him success in all his endeavors.  We also understand that without the help of his parents, things would be much more difficult.

Mary J Fitzpatrick
HopeNet Board Secretary
St. Louis, Missouri

HopeNET is about hope

I know it sounds trite but HopeNET is about hope. We aim for something higher than just being a source of information regarding Essential Tremor. We do plan to provide information but we also want to be a gathering point in which people affected by Essential Tremor can come to feel part of a community.  Almost all of us who have ET have felt that sense of being alone. At one point or another, we have been reluctant to speak or hesitant to meet people. HopeNET is not offering a magic elixir. Rather we are a forum in which we can share and help each other deal with this condition.

We want to see a better appreciation for the difficulties facing those with Essential Tremor. I am well aware that there are a number of other neurological conditions that are devastating. But I have seen first hand the lack of appreciation of the difficulties we face on the part of the overall community in which we live and the medical community in particular. One of HopeNET’s primary goals is to foster better consideration of Essential Tremor. We plan to do that by working collectively to inform others. This will require a medium for fostering mutual understanding and help for those affected by ET. HopeNET’s website will primarily be that medium.

An example is coping mechanisms for dealing with ET. We all have learned some means of dealing with the condition. There is much to be gained by sharing what we’ve learned so that our lives are made easier. But I see the need to broaden HopeNET’s scope. What about something like internal tremor? I have heard countless stories about its effects – that are almost traumatic at times. Yet few outside those with ET know about it, and that includes most of the people in the medical community. HopeNET intends to work very hard to make people aware of it and hopefully provide better consideration for those affected by it.

We want HopeNET to be a two-way street. We will all benefit by sharing our experiences. In the process, this should lead to an increase awareness of Essential Tremor – the ultimate goal.