Essential Tremor Symposium at Holy Cross Hospital

Shown is Peter Muller beginning the joint Essential Tremor support group meeting at Holy Cross Hospital on June 6, 2015.
Shown is Peter Muller beginning the joint Essential Tremor support group meeting at Holy Cross Hospital on June 6, 2015.*

The June 6th Essential Tremor support group meeting at Holy Cross Hospital in Silver Spring, MD brought together close to 50 members of area Essential Tremor support groups from places like Silver Spring and Columbia, Maryland and Loudoun County and Falls Church, Virginia. There were two speakers preceded by remarks by Peter Muller from HopeNet. Muller informed the audience about what happened last month at a conference HopeNet worked to arrange, held at the National Institute of Neurological Disorders and Stroke (NINDS), a part of NIH. Forty neurologists and ET researchers attended the conference. What they agreed on is that treatment for ET is not possible if they do not know what the condition is. ET presents differently in each person, with varying symptoms such as hand tremors, head tremors, voice tremors, etc., and there can be overlap with other conditions such as Dystonia. These experts decided it would be beneficial to use hand tremors as the focal point to pinpoint what ET is, which suggests there will be upcoming studies.

Moving on, the support group audience was fortunate to hear from Dr. Maguire-Zeiss of Georgetown University’s Department of Neurology who gave a brief overview of the mechanisms in the brain thought to be involved in ET such as the cerebellum, motor cortex and thalamus. There is a question about the role the inferior olive plays as well. Maguire-Zeiss focused on neurons and likened the movement of neurons in the brain to an (electric) circuit and pointed out that if there is a “hiccup in the loop,” that can lead to more body movement (as seen in ET) or less body movement (as seen in Parkinson’s Disease).

Another guest speaker was Dr. T. Sean Vasaitis, Professor of Pharmaceutical Sciences at University of MD, Eastern Shore, who has ET himself and is a practitioner and instructor of the Chen style of Tai Chi. Dr. Vasaitis spoke about body control and elaborated on the benefits of Tai Chi such as reducing stress, releasing tension, improved calm, sleep quality and other cognitive functions. He is exploring the idea of a study on the effects Tai Chi can have on ET patients and speculated that starting out there would be a suggested practice of Tai Chi 2-3 times per week.

HopeNet organized this support group meeting and continues to work toward helping people with ET. Another similar meeting of these support groups is likely to be planned for the fall season, and will again be open to other interested individuals.

Please check www.thehopenet.org for upcoming schedule and registration information.

Lisa Gannon
Silver Spring Support Group Member

 

* PHOTO BY LISA GANNON

Alzheimer & Parkinson Association opens doors to Essential Tremor

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.

Executive Director Update

On November 15, I returned to the National Institutes of Health (NIH). I have been there a number of times before: 1) to participate in the trial studying One Octanol, 2) to attend a conference on how non-profit organizations, involved in advocating for those with neurological disorders, can better collaborate with the National Institute for Neurological Disorders & Stroke (NINDS), 3) to participate in a trial to determine if there are any adverse effects on the rest of the body of Octanoic acid, 4) to participate in a trial to determine why people with ET frequently use two hands when holding something, and 5) to participate in a trial to determine the effects of alcohol on ET.

NINDS is well run, and the staff is both friendly & helpful. If you ever have an opportunity to participate in a trial there, please do so. You will find it to be a rewarding experience in more ways than one. As I have frequently said, taxpayers are definetly getting their money’s worth from what is being done at NINDS.

My visit on November 15 started with Dr. Dietrich Haubenberger testing my Essential Tremor. He used a scale that has recently been improved by a task force. The task force was created by the Movement Disorder Society to get a better understanding of Essential Tremor.

Next I participated in a trial of a new mouse developed by an employee of NINDS. Dr Haubenberger administered the test.

Finally, Dr Haubenberger and I discussed the current situation with Essential Tremor. He is in an ideal position to provide a good perspective. He works part time at NINDS. He is in the Neurology Department at the University of Vienna. He is also on the aforementioned task force. Being in Europe, he is close to what is happening there. Much is being done in countries like Spain & Italy as well as the rest of Europe.

In our discussion, he repeated what I am often hearing that there is no one Essential Tremor. Each patient must be treated individually based on their symptoms. He also said that he felt that NINDS would restart the Octanoic Acid study sometime in the future.

Peter Muller
Executive Director

Essential Tremor Clinical Research Hope for the Future Conference

Oct 20, 2012 – Fort Belvoir, VA.  As the conference title suggests, this gathering was intended to give hope to those with essential tremor (ET), a condition estimated to affect a high number of Americans, approximately 10 million according to recent literature. There are likely many more who do not know they have it perhaps attributing their shaking hands to being nervous. They may attempt to control it and hide it, rather than seek treatment from a neurologist or more specifically a movement disorder specialist.

There were sixty-two in attendance mostly from area ET support groups in Silver Spring and Columbia, MD and Falls Church and Landsdowne, Virginia. The conference speakers were Dr. Codrin Lungu (Deputy Clinical Dir of Clinical Research), who runs the Parkinson’s Clinic and the medical side of the Deep Brain Stimulation (DBS) program at the National Institute of Neurological Disorders & Stroke; Dr. Claudia Testa (Associate Director Clinical Care and Research, Virginia Commonwealth University, Parkinson’s & Movement Disorders Center); and Dr. Mark Hallett (Chief, Motor Control Section, NINDS).

Peter Muller, Executive Director of HopeNET, a foundation working to increase awareness of ET, gave the opening remarks and let us know the latest about a fairly new procedure called MRI Focused Ultrasound. The University of Virginia did a pilot trial in 2011 whereby mri focused ultrasound surgery was performed on fifteen patients and it must have been seen as a success as evidenced by the 6000 on the waiting list for the procedure. Muller expressed excitement for this technology and introduced Jessica Foley, Scientific Director of the Focused Ultrasound Society. He also introduced Deb Zeller, the President of the Virginia School Nurses Association. HopeNET is jointly working with Ms Zeller on a project to develop a Careplan for use by school nurses with children who have ET.

Muller has been instrumental in bringing people with the condition closer to the medical community in a search for treatment, therapies and ultimately a cure, first in his position as a Community Ambassador to the International Essential Tremor Foundation and now for HopeNET. Muller told the group about the series of surveys being conducted by HopeNET and Tremor Action Network to answer questions on the various symptoms and treatments for ET. The last survey in French was sent to 1400 in France, Belgium and Quebec, Canada.

The first speaker, Dr. Lungu, explained in detail the procedure deep brain stimulation (DBS), a surgical option for those with significant tremor that does not respond to medication. DBS was first performed on an ET patient but now is more often used for another more well-known movement disorder, Parkinson’s Disease. DBS is “electrical therapy” for tremor and is like a pacemaker for the brain that intervenes and normalizes the electrical signals thrown off by disease, as Lungu explained it. DBS is brain surgery that involves drilling two holes in the skull the size of a dime and running electrodes to the deep structures of the brain to block the abnormal signals at the thalamus. The wires run from the thalamus (at a point called the vim) down under the skin behind the ear, down the neck and meets a small battery pacemaker in front of the chest from which the voltage and frequency are chosen. Dr. Lungu made it clear that this surgery ‘is the process, not the event,’ as he said one of his colleagues puts it. The event is the 24/7 adjustment of the electrical stimulation from the pacemaker. There are exclusion criteria for DBS – generally healthy candidates should elect this surgery and those without depression because DBS could make it worse. People also need to know what to expect. For example, the problem is still there after DBS, it is just being covered up symptomatically. DBS has its imperfections such as the fact that the motor part of the brain is separated into left brain and right brain meaning that DBS has to be done one side at a time. The dominant side is often the side done. If a person elects to have both sides done Dr. Lungu prefers to do both sides at once rather than one side now and the other side at a later surgery. He went over the risks of the surgery and the side effects, such as very mild verbal fluency issues, and subtle balance issues.

One attendee suggested getting ET listed in items asked about in the National Health Interview Survey that the Nat’l Center for Health Statistics conducts or the Health & Nutrition Examination Survey.

Dr. Testa spoke about clinical research using genetic research to give people a better understanding of the process. Clinical research as a term means working with people to study human disease. There are clinical trials in which a new intervention is tested in people, observational trials where researchers don’t try to intervene but observe only, and then there are trials dealing with parts of people, such as blood and saliva samples to get DNA for those studies. Where do research questions come from? The researchers think about basic biology of the brain and come up with ideas, and there’s community-based research, such as the surveys HopeNET has been conducting. A VCU neuropsychologist is presently doing a needs-based survey for movement disorders that will help determine ideas on ways to proceed. ET affected individuals are encouraged to participate. Understanding disease in people means looking at the mechanisms of how things work, and then the treatments that need to be developed.

An example of traditional research, called epidemiology, studies large groups of people. A famous one is the Framingham, Mass study consisting of the entire town’s population and has been studied for forty years. The resulting information has been used to find risk factors for heart disease and others. There have also been door-to-door surveys for ET (an epidemiologist and neurologist together that examined people on the spot) in places like Turkey and Spain. In those communities four percent of those over 40 years of age were found to have ET. Another example of working with people deals with looking at the brain to understand the mechanisms involved such as imaging, MRIs or functional scans looking at blood flow. Also the brain banks at Columbia University in NY and at the Arizona Study of Aging and Neurodegenerative Disorders, study the brains donated by people with ET. Research papers from these studies have only been coming out in the past few years. VCU, where Testa works, houses the MidAtlantic Twin Registry, “an amazing resource,” she says in her genetic studies and how they play a role in ET.

Testa explained, “We don’t know of a single gene mutation that causes ET.” A lot of research has been done on the connection between a change in the gene and disease. She spoke about establishing linkages across families using DNA. She explained how the Lingo-1 gene discovered to play a role in ET, does not make protein which implies it doesn’t code (for protein) so there is more work to do to discover details about that interon area – without proteins it is more difficult to study. Testa explained the genome and the detailed clues it might hold.

Our next speaker was Dr. Mark Hallett started his talk by emphasizing people’s participation in research studies since there haven’t been many good animal models. He said trying to address the basic pathophysiology or cause of ET is necessary if a rational treatment is to be created.  We still don’t understand where ET comes from so genetics is an important area to study. Hallett is of the opinion that ET is not a single entity but multiple different entities, meaning a family of diseases, which may be why it’s been difficult to find a single gene that is underlying it.  Hallett explained there may be different types of ET, meaning different pathophysiologies and different therapies. In other words, ET may look the same in two different people on the outside but be different on the inside. When it comes to ET responsiveness to alcoholic beverages, some people respond with a reduction of tremor and others do not – which may be an indicator of ET subtypes. Hallett asked for a show of hands about people’s responsiveness to alcoholic drinks, in that they show an improvement in tremor when drinking alcohol. The majority of the audience raised their hands. Alcohol also can have a rebound effect, he said, whereby once it wears off the tremor returns worse, temporarily.

The Movement Disorder Society is the international society of mostly neurologists, and it has taskforces looking into different types of tremor. Hallett is on a taskforce to come up with better definitions of ET and differentiate its subtypes. Hallett went over the few drugs on the market that help ET. Primidone and beta blockers are the two most common. Sometimes they work for a while and wear off. Some anticonvulsant medicines have benefit: gabapentin, topiramate and others. He said that there is not much work going on in the active development of other drugs for ET. Before he came to the conference today he checked the clinicaltrials.gov website to see what clinical research is being done in the world, and at the moment there are zero – as in no clinical trials being done in the area of ET research. The pipeline needs to be stimulated in this regard.

He gave us the alcohol or octanol story to give a sense of what the process of drug development is like at the NIH. He cited Rodolfo Llinas, a neuroscientist who studied longer chain alcohols and patented them all – saying they would be good for treating any tremor. Octanol worked better in the animal studies than ethanol did. Octanol (an 8 carbon atom) was found to be one of the best longer chain alcohols for the condition and through studies at the NIH they realized that the octanol is metabolized or broken down in the blood  into octanoic acid. How many carbons is best is the question. These studies on octanol and octanoic acid at NIH have taken about 10 years to complete. NIH received a “use patent” to support development. With a pharmaceutical company, NIH started the clinical trial process. Hallett went on to explain that the cost to do an animal toxicology test and to safely try it in humans runs approximately one million dollars. It is difficult to develop a pharmaceutical. The conclusions show that octanol was efficacious to a certain extent, without people getting drunk. At a minimum, it will take several more years for the FDA to approve octanoic acid as a drug. Octanoic acid is a component of the ketogenic diet, a special diet mostly consisting of fat given to children with very severe epilepsy. Someone discovered this diet could help and it’s been used for years. A challenge is how to administer it. It tastes terrible so time needs to be spent encapsulating it. One attendee mentioned to Dr. Hallett that long periods of fasting has helped improve his tremor. Hallett explained that when you fast, your body’s metabolism changes more toward energy from ketones than from sugars. You are converting your body metabolism to a state similar to someone on a ketogenic diet.

Hallett suggested that the alcohol interfering with the calcium channel story may not be right for explaining ET and that maybe a GABA abnormality is a better model for ET than the harmaline animal study model. Another clinical trial from France involves transcranial magnetic stimulation (TMS), external stimulation over the cerebellum that reduced the severity of tremor for a period of time. TMS was given daily for 5 days and the efficacy was for 3 months. TMS has been approved for one type of depression, refractory depression.

Questions were asked of the 3 doctors at the end of the conference. Hallett talked about how relaxation and reducing anxiety and stress help to improve tremor. The hormone, cortisol, in the body is released in response to anxiety and stress and causes the brain to shrink! Dr. Testa talked about observations of the community – the changes in anxiety for people with ET as compared with those without it. There’s a powerful pathway between the unconscious mind and mood states as well as really strong symptoms in the body. Dr. Testa suggested that maybe ET patients experience more anxiety symptoms as a result of the ET. Dr. Lungu concurred that it’s unclear whether the anxiety is part of the biological condition of the disease. Dr. Hallett was asked if there is a connection between epilepsy and ET. He responded that the pathophysiology of epilepsy is well-known. Nothing at any level, at the cellular level, at the thalamus, through EEG or neuroimaging shows a connection. In answer to the question why do the anticonvulsants like primidone, gabapentin and others work for ET, Dr Hallett said these drugs all have multiple effects but we do not know how. Dr. Hallett believes that since the prevalence of ET is high, he thinks pharmaceutical companies should be more interested in developing drugs for it. Dr. Testa said the epidemiology studies indicate age of onset is in general in older adults. Hallett said that patients can help by going to their congressman to say ET is an important concern, and there are a lot of us with the condition.  Joan Marie Barringer, the Support Group Leader from Vero Beach, Florida brought up the DSM Diagnostic Statistic Manual that says many of those with tremor have social phobia.

Conference attendees were pleased with the cooperation of the local medical community at places like NIH and VCU in communicating their expertise, thoughts and findings to the ET community.

Lisa Gannon
Silver Spring Support Group

Ultrasound Clinical Trials at UVA

I feel like I was one of the lucky ones to be included in the focus ultrasound clinical trials at the University of Virginia. This experimental procedure was done at no cost to me through a federal grant. My sister read about the trials in the Richmond newspaper. When I first inquired about the program the possibility of acceptance was bleak. Hundreds of people were interested and I was pretty far down on the list. However most of these could not meet the designated criteria. Prior to being accepted I had to undergo 3 days of testing over a 3 month period. The tests and interviews were administered by a variety of doctors. I met with the UVA coordinator, the surgeon who would perform the procedure ( Dr. Elias ), a neurologist, a physical therapist, a psychiatrist, and a psychologist. I had to have ekgs, bloodwork, and a catscan of the brain.

On 9/7/11 I reported for surgery. My head was shaved and rubber tubing was placed on my head. The operating room was filled with doctors as well as the engineers who built the ultrasound machine. I was placed in a catscan for about 7 hours. It was a long process for me since it took a long time to line up the scanner before they zapped my brain. I was zapped more times than I can remember.

I had 3 follow up visits to Charlottesville to be checked out by the team. They were genuinely interested in how I was recovering. They were very professional and very caring. What a great group.

Prior to the procedure I was told that it would only improve my right hand and it was successful. I can now write in a checkbook and eat in public. I was hoping it would take away some of my head tremors but it didn’t. Head tremors are most common in women.

I have had tremors in my hands since I was in my 20s and they started in my neck/head in my 40s. Even though my right hand is normal, I still have tremors in my head and left hand and my voice is shaky. If I get nervous or do anything out of the ordinary my tremors increase significantly. ET destroys your confidence and it hard to find jobs. You are also aware of people staring at you in public.

I am extremely thankful to Dr. Elias and all of the others that made this a success. This gives encouragement to those with ET. I hope that this process can be used to treat/cure other conditions in the future.

Becky Epton
Member, Falls Church Support Group

Essential Tremor: Tips for Eating and Drinking

Over the  twenty-four years I’ve lived with essential tremor, I’ve found ways to deal with the annoying eating and drinking problems caused by tremors. I’d like to share them with you.

Tall drinking glasses are like me:  top-heavy.  They are easy to tip over.  Using wide, bottom-weighted drinking glasses has saved me from spilling drinks more times than I can count.  You can ask a waiter for a low ball glass like the one on the left below at a restaurant.

Two drinking glasses

 

Heavy knives, forks and spoons are easier to handle.  Their weight means they don’t respond as much to hand tremors.  There is no need to reinvent the wheel.  I found what I needed advertised to help arthritis sufferers.  The utensils in the picture below, Oxo Good Grips, with broad slightly weighted handles, have helped counteract my tremor and made eating easier.  I found them online under “aids for arthritis.”   I wonder if a wrist weight would help as well.

Three spoons, one knife

Please add your tips on this or other issues.  Help with handwriting for a person with hand tremors is something I’d like to read.  Post it on this blog.

Thank you.

Joyce Letzler
ET Support Group Member and Volunteer

ET and Depression

Some days, I wake up feeling depressed.  I just don’t feel like getting up.  My monkey mind starts with ideas like “I’m too tired” and “I just don’t want to face life, especially with this tremor.”  Let’s face it, I don’t know a human soul who doesn’t have a bad day or even difficult times.  As a counselor, I listen to many situations from serious to everyday annoyances.  I’ve begun to notice that everyone has them.  As a famous psychiatrist, Viktor Frankl, who experienced a concentration camp once said, “The last of one’s freedoms is to choose ones attitude in any given circumstance.”

This may seem strange to some, but I’ve learned that even challenging situations are signs that positive change is occurring.  For example, I have a huge estate on the market which is my dream house.  My realtor, handyman, friends and I worked very hard to get the house clean, fixed and ready to sell.  I found myself working night and day to paint, clean and stage the house.  In the middle of cleaning out my art studio I started to cry for two reasons.  One reason was I was selling my dream home, even though I knew it was the right time, it felt like losing a part of me that felt safe and peaceful.  The second reason was my tremor was worse and I was overdoing it.

I’ve learned that the best way out of feeling sad or depressed is to do something in order to feel better.  I asked myself what would make me feel better. I know that crying is a good release and opens the heart.  This was good for me instead of suppressing my emotions.  Even men are doing more of it on shows like The Bachelorette when they get disappointed that they lost the girl they had their heart set on.  I’m glad that it is OK to feel our emotions these days.  Getting out of a depressed state takes action so I asked myself what would make me feel better.  I followed my intuition to call a friend to go to a movie.  I wanted to get out of the house and I realized that I was hungry too, which can definitely affect my tremors. While eating I explained to my friend my situation and why my shaking was worse than usual.  Guess what, it improved by eating and sharing.

When I returned home, I felt better and I was shaking less.  I got a good night’s sleep and got busy preparing the house for my Mother to visit me while her bathroom was being converted from a bathtub to a shower. I wasn’t sure I could handle it before my outing, but now I had the energy and faith that all would work out fine.  She has a tremor too and can get irritable when her medication isn’t working or when she doesn’t get enough sleep.  When she arrived, Mother even made the comment that she thought she might be depressed.  I thought to myself, what can I do to help her feel better? I have realized that it is often the little things that help change our attitude.  I helped to make her physically comfortable by feeding her and helping her bathe.  I then showed her how to play solitaire and mahjong on my iPad.  I saw that cute “little girl smile” cross her face.  For a couple of hours, Mother forgot she had a tremor and decided she wanted an iPad to play games on and the touch screen was easy for her to use.  I ended up giving her one for an early 86th birthday gift (her birthday is not until the end of August).  She is now showing other seniors how to use it.

One lady called me on the phone about joining the ET support group.  She said that she doesn’t leave the house and has a company bringing food to her.  She is 60 years old.  I asked her the reason she stays home.  I wondered if she had another illness besides ET.  Her response was that she lives alone and doesn’t want to eat in a restaurant in front of people.  “I think I’m depressed,” she said, “because I don’t feel like doing anything.”  I told her that it would take courage for her to come to the meeting but that I know she would feel better if she did.  She is working on getting a ride.  I hope she comes.

Sometimes embarrassment or social phobia due to tremors can lead to depression.  Clinically speaking, depression is described as anger turned inward about a situation, in this case ET, lack of interest in life due to frustration about it.  It can cause a person to decide not to feed oneself or function at all.  I feel sad when I hear about this lack of freedom.  I’ve been there before, until I decided to open up, tell others and find everything I can to feel better, such as medical discoveries, natural remedies or doing the simple things that help me to take action to improve my life.

Most of the time, I’m now waking up as someone with a purpose, a simple one, to love and accept myself and others with or without tremors.  I was guided to become a counselor when I decided to take action and ask for a purpose.  I will do all I can to research and find new ways of living with or eradicating ET, a condition I have had all my life. I have found that light always shines after darkness.  I’ve seen people with tremors so severe that they could barely function and others with less frequency.  Some are focusing on what they can’t do and others want to know techniques for feeling better. I now choose the latter.  What I love about conferences and support groups is we can all work together to learn from the medical community about research, and  experiment and share with each other how we can improve our quality of life each day.

Joan Marie Barringer
HopeNet Board Member

Revealing the ET Secret

This morning, I had to fill out a form for a rebate.  I had just taken a walk.  Sometimes I find that my ET is worse after exercise, especially in my hands.   I like to rest a little before I start with tasks.  I began filling in the letters in the little squares on the form.  It was challenging for me today.  I couldn’t read some of the letters I had written myself.  My intuition told me to go down to the lobby of my apartment building to ask the receptionist to help me.

“Can you do me a favor?” I asked.  “You know I will,” she answered with a smile.  I asked her if she had some white out so I could correct some letters on the page I was filling out.  She handed it to me and I started to shake.  “Do you want me to do it for you?” she asked.  “Sure,” I gratefully answered.  I explained to her that I have Essential Tremor, a condition I have had since I was a child.  I asked her if she remembered Katharine Hepburn whose head and voice shook.  Just like Michael J. Fox is to Parkinson’s, I’ve found it helps to bring up a celebrity when explaining what ET is.

It took me a long time to get over the embarrassment of having ET.  It seemed like the more I discussed it with others, the better I began to feel.  The underlying shame began to dissipate.  As a support group leader, I have found that I really do teach what I need to reinforce in myself.  One lady in my Florida group said to me that before she came to the group she never told anyone about her ET.  She happily explained that now she tells everyone and feels so free to be herself.  The same lady said she realizes that she is increasing awareness of ET with everyone she opens up to.

I remember one time I was getting a rental car after a long flight.  I asked for help in filling out the form because I was tired and my hands were shaking.  After explaining to the man that I had ET, he actually decided to upgrade my car.  “I think my favorite aunt had what you have.  She was so nice but we just thought shaking was part of her.”  I told him about a cousin I have who kept it a secret for years until I began talking about it.  She too kept her physical and emotional pain to herself until she cried and said, “It isn’t my fault, is it?”  I said no and gave her a hug.

As a counselor, I studied the book of diagnoses, the DSM, when getting my Master’s.  As I was learning about different conditions, I noticed that tremor was mentioned in the book.  Along with a short description, it said that people with tremor can suffer from “Social Phobia”.  I could certainly relate to the feeling of wanting to hide from people because of my tremor.  I have talked to some people who actually stay home instead of attending social events because of their tremor.

I felt so much closer to my friend in the office when I shared my secret today.  She shared her secret about how she had lost a lot of weight, but still sees herself as fat.  I reassured her that it takes time to really feel the change inside.  I used to feel different than others and could relate to a sense of isolation with my condition, ET. After developing healthy habits, it took revealing my story and trusting others to become more human.

Joan Marie Barringer
HopeNet Board Member