Living with Essential Tremor (ET)

HopeNET is about hope

by

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.

Acknowledgements

by

As with any organization, it is people who make it successful, and there are many who have helped create HopeNET. I am very thankful to all of them.

First and foremost is Rose Schooff who has created the website. In addition to her technical expertise and hard work, she has brought a real appreciation of the difficulties and challenges facing a person with a little-known neurological disorder.

Justin Trent and Kelly Helmuth of the law firm of McGuire Woods in Richmond have handled all the legal work involved in getting HopeNET incorporated and tax-exempt. It has involved a lot of work for which I am very appreciative.

Kathleen Welker of Tremor Action Network has worked collaboratively with me from the outset providing valuable insight and support.

Special thanks are in order for Dr. Stephen Grill. In addition to being the President of the Board of HopeNET, members of the Columbia support group use his office every month for their meeting. He also played the central role in putting together the one-page brochure that we will be giving to doctors to increase awareness of Essential Tremor.

Lourdes  Cuevas of Capital One Bank has been very helpful in creating and supporting HopeNET’s bank account.

Mary Fitzpatrick has been solid in providing support as HopeNET has gone through the usual growing pains to be expected with a new organization.

Thanks too to my brother, Skip – a CPA, for handling all tax-related issues.

There have many more who have contributed money and/or time – Joan Marie Barringer, Fred Berko, Becky Epton, Lou DeVaughn, Phillip Fauntleroy, Sue Fillmore, Sheliah Hurt, Steph Jewell, Doris Mapes, Barbara McCarthy, Robert & Vera Mendoza, Dan & Shirley Miller, Fatta Nahab, Nora Rudd, and Claudia Testa. I am especially appreciative of what Joyce Letzler has done.

Finally, I want to thank my wife, Pat.  She has contributed a lot in making copies, handling correspondence & phone calls, reviewing & editing various things I have written, providing ideas, etc.  Just as importantly, I have had Essential Tremor throughout our marriage, and she has made my life easier by doing many every-day things to help me.