Living with Essential Tremor (ET)

Medical Advisory Board

by

HopeNET is very pleased to announce the creation of a medical advisory board. All of these doctors have done noteworthy research regarding Essential Tremor. HopeNET is indeed fortunate to have their input as it moves forward in increasing awareness of Essential Tremor and helping those with the condition.

Dr. Alberto Espay, University of Cincinnati Academic Health Center

Dr. Alfonso Fasano, Toronto Western Hospital

Dr. Dietrich Haubenberger, University of Vienna

Dr. Fatta Nahab, University of Miami

Dr. Claudia Testa, Virginia Commonwealth University Parkinson’s & Movement Disorder Center

Medical Advisory Board

by

HopeNET is very pleased to announce the creation of a medical advisory board. All of these doctors have done noteworthy research regarding Essential Tremor. HopeNET is indeed fortunate to have their input as it moves forward in increasing awareness of Essential Tremor and helping those with the condition.

Dr. Alberto Espay, University of Cincinnati Academic Health Center

Dr. Alfonso Fasano, Toronto Western Hospital

Dr. Dietrich Haubenberger, University of Vienna

Dr. Fatta Nahab, University of Miami

Dr. Claudia Testa, Virginia Commonwealth University Parkinson’s & Movement Disorder Center

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

by

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

by

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

ET Research in Italy

by

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

by

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

Caleb . . . December 11, 2012

by

It has been about six weeks since Caleb received his Forte’. I talked with him today to see how things are going and what he thinks about it.  Caleb said he is very pleased with his Forte’.  He said that it is great for writing compositions and doing projects.  It eliminates him having to erase, and he can do spell checks and corrections so quickly that it really speeds up his writing.  His teachers believe it has helped him quite a bit, but that he could use it more. Caleb said that the homework that in the past took him thirty minutes, he now does in about ten minutes.

Some of Caleb’s comments about the Forte’ are, “It is very helpful for people with hand tremors.”  He says he uses it most for his work in Social Studies and Communication Skills and that the other kids wish they had one.  And  . . . Oh yes, he really likes it!

Mary Fitpatrick
St. Louis Support Leader

Caleb October 2012 Update

Caleb has entered the seventh grade…..

Caleb Eaton

Essential Tremor Meeting Saint Louis, MO

Caleb . . . December 11, 2012

by

It has been about six weeks since Caleb received his Forte’. I talked with him today to see how things are going and what he thinks about it.  Caleb said he is very pleased with his Forte’.  He said that it is great for writing compositions and doing projects.  It eliminates him having to erase, and he can do spell checks and corrections so quickly that it really speeds up his writing.  His teachers believe it has helped him quite a bit, but that he could use it more. Caleb said that the homework that in the past took him thirty minutes, he now does in about ten minutes.

Some of Caleb’s comments about the Forte’ are, “It is very helpful for people with hand tremors.”  He says he uses it most for his work in Social Studies and Communication Skills and that the other kids wish they had one.  And  . . . Oh yes, he really likes it!

Mary Fitpatrick
St. Louis Support Leader

Caleb October 2012 Update

Caleb has entered the seventh grade…..

Caleb Eaton

Essential Tremor Meeting Saint Louis, MO

Congressional Neuroscience Caucus Meeting

by

On Monday, December 3, I attended the Congressional Neuroscience Caucus meeting on Capitol Hill, representing Tremor Action Network. The speaker was Ms. Veronika Litinski, the Senior Advisor, Healthcare & Life Sciences, for MaRS, Canada’s leading innovation center.

In speaking about the brain, she said that we know a lot about its parts but little about how it works as a whole or how it unfolds.

The determinants of brain health are:

  • Biology
  • Society
  • Nutrition
  • Physical Activity

Studies have shown that there are ways to improve one’s brain

  • Meditation – the brain actually grows making additional connections.
  • Social interaction – has been proven to help in rehabilitation.
  • Diet, exercise and lowering stress – exercise creates new neurons.

She said that there is a need in healthcare to change confused patients into informed consumers. Mental healthcare is not the same as the rest of healthcare. Consumers struggle with brain-related issues almost silently, sometimes resignation, and a general lack of resolve to do something. Studies have shown that there is a four year delay between the onset of a condition and the time when a person actually gets treatment involving a brain-related condition. It is especially confusing for parents seeking treatment for their children. Other forms of healthcare are less confusing for those seeking treatment.

To help patients be informed consumers, digital healthcare will play an increasingly greater role. Part of this will require more networking between like-minded organizations.

Embarrassed > From quiet > Informed
Multiple symptoms struggle to Recognize issue
Not Urgent engaged patient Find clarity
Dismissal Responsibly concerned
Confused Seek help
It’s normal Take charge

People can help themselves in making better decisions, problem solving and inhibitory control – by better understanding how they function, maximizing their abilities and controlling their work and life contexts better. By knowing what part of the day is optimal, a person can schedule their activities accordingly.

Peter Muller
Executive Director

Alzheimer & Parkinson Association opens doors to Essential Tremor

by

Below is an article that appeared in the Vero’s Voice, a Vero Beach, Florida newspaper

Alzheimer & Parkinson Association opens doors to Essential Tremor
By Joan Marie Barringer, MEd, CHT

Last year, I phoned the Alzheimer & Parkinson Association of Indian River County and asked if I could start an Essential Tremor Group there.  After explaining the need for help for those individuals who have been diagnosed with the tremor disorder that affects more than 10 million Americans, the answer was affirmative.  I explained Essential Tremor (ET) and my personal story.

When I was a child I was bullied.  Kids made fun of me even though I was smart.  Remembering comments like, “You are so nervous,” and, “Why can’t you stand on your own two feet?” would bring tears to my eyes.  My friend, Bob Votruba of One Million Acts of Kindness,  knows what I mean as he speaks to teens about the pain of bullying and the need to be kind.  I felt so alone back then.  Speaking in front of the class was terrifying.  Rhett Palmer asked during a radio interview,  “Didn’t it give you compassion?”  I had to answer, “Yes.”  “You aren’t shaking much now,” he mentioned.  I had to admit that he was right. My body, mind and spirit remedies have enhanced my quality of life.  I am now content as a motivational speaker.

I have my days.  That is my need for the support group.  I have a Master’s in Agency Counseling and I am working on a PhD in Holistic Life Counseling.  I help a variety of individuals now, but ET is close to home.  I started the first ET support group for the International Essential Tremor Foundation (IETF) in Washington, DC at Georgetown University Hospital.  When I go to a doctor’s office, writing can still be a challenge for me.  I ask for help.  I teach others to open up and tell people about their tremor.  So many keep it a secret and have expressed feelings of shame.  In the DSM, the book of diagnoses, it states that those with tremor can have “social phobia”.

Many are misdiagnosed.  One twelve-year-old boy was diagnosed as bi-polar and was prescribed Lithium, which has tremor as a side effect and exacerbated his condition.  His parents considered putting him up for adoption.  In my research, I noticed that The Washington Post had reported that Katharine Hepburn died of Parkinson’s, but she had recently spoken to a few thousand in California about her ET.  These misconceptions are all due to lack of information.

I am on the board of HopeNET, headed by CEO Peter Muller, a non-profit organization comprised of physicians, clinical researchers, counselors and nurses.  NET stands for “No More ET”.  Organizations are continuing to work with doctors and speak to school children about ET.  I went to Congress with the IETF, not to ask for money, but we asked for a month of ET Awareness.  The month of March became official in 2010.  We are now attempting to spread the word.  Unlike what some people, even professionals believe, ET can be be disabling with emotional ramifications.  Individuals with ET can have difficulty maintaining jobs or functioning in general.  This condition has not gotten the support or financial backing it deserves.  Research for the only medication for ET, 1-Octanol, was discontinued due to lack of funding.  In the magazines of the American Academy of Neurology, ET isn’t mentioned on the list of neurological conditions, even though it is the most common movement disorder.

The good news is that Peggy Cunningham, Executive Director of the Alzheimer & Parkinson Association, is hosting the first Essential Tremor Awareness Day in Vero at the Northern Trust Bank on February 7, 2013.  Neurologists specializing in ET will speak.  Call the Association at 772-563-0505 for reservations.  The ongoing ET Support Group meets on the first and third Wednesday of the month at 2:00 pm.

Thank you to Vicki Suplizio, Vice-Chair of the Alzheimer & Parkinson Association of Indian River County, for your support.