What does it mean to have a disorder like ET?

What does it “mean” to have a disorder like ET? It’s not a disease. As you and I know it’s probably more like an umbrella term covering a family of different problems all united by one primary symptom – tremor. How do we gain more knowledge about ET and our own conditions? Having a visible tremor is a “sign” to others that there is something wrong with our brains. What this means to others has a direct bearing on what it means to us. And it’s not easy to communicate what it’s like to have ET to others, including health professionals. So how do we know what is important to communicate?

New research comes out, and it’s hard not to personalize it and assume that whatever it says applies to me or to be upset that it clearly doesn’t apply to me! There are many studies of people with ET that show an inflated rate of this or that among people with ET. As an epidemiologist, let me tell you the main problem I have with some of these studies: many of these studies don’t bother to provide or consider the base rate—this is the rate of a particular disorder in the general population, and it helps one understand whether a finding means anything in particular.

Let’s take depression for instance. A study tells you that X% of those with ET also have depression. Gosh, you might say, this may mean my ET makes it more likely that I’ll be depressed. (Well if you kept missing your mouth when you tried to eat peas or apply lipstick, you might also have some general distress towards your functioning – but hey, that’s distress, not depression, which is a clinical diagnosis with many symptoms over at least a two-week time span). What the researchers often don’t tell you is whether this rate is more or less than in the population at large. In fact, depression is a prevalent problem in the general population! Here’s where I have to get a little specific. Again, depression requires a group of symptoms that occurred for at least a two-week period. So if we are asking people about the last two weeks, all we can find is if they are currently in a two-week period of depression. If they started coming out of it a week ago, we won’t accurately measure the fact that in the last 30 days they have been depressed. If we measure the last 30 days only, we won’t know if they had a depressive episode last month that may have resolved enough – not completely, but enough – for them not to reach diagnostic criteria. Finally, if we measure lifetime, we might find out if they have EVER had depression. This ever category is always the biggest. It counts the prevalence of past-30-day (commonly called current) depression and it counts any lifetime episode. Measured this way, one in five people in the U.S. has ever been depressed. So if a study measures the association of depression, lifetime, with ANYTHING, it is very likely to be positive, to look elevated, if you don’t account for the base rate of the disorder in the population. I’m only using depression as an example. The bottom line is that we have to remember when we read the literature that just because someone finds that something is associated with ET doesn’t necessarily mean much. It doesn’t mean with our type of ET we are at higher risk for another disorder or disease.

So what do we need to be communicating to health professionals and, in turn, to researchers? What don’t they know that prevents them from being able to help us with? What about that my hand tremor is only a small part of what my ET is and how it affects me. Lately when I’m laying down to sleep, my neck and head tremor bother me and keep me from falling asleep. I try to get in a position that will lessen it, but I find it difficult to do. I’m still taking less propranolol than I could; maybe it would go away if I took more, or really cut out caffeine from my diet. I also realize that for years I’ve been clenching my jaws to cut down on jaw tremor. Not good for the enamel on my teeth or for my joint! Here’s another weird one – maybe you can relate, maybe not. When someone picks a table that will cause people to sit really close together, or in theaters or other places where the chairs are really small, and some of the people just have to spread their legs and take up lots of space, I’ll be really uncomfortable. Why? Because I’ll be almost forced to activate my muscles to hold my legs closely together, and that will lead to tremor, and then I’ll be really uncomfortable; and honestly it’s hard for me to even communicate what I’m talking about to people who don’t have a tremor. Actually I think the list of what I don’t share about my ET is huge. I didn’t realize it until I started writing this! And that’s just about different tremors, probably not the most important thing about ET to me.

That is the feeling I get when I forget to take my medicine. I feel off balance, like something inside knows something isn’t quite right. And I don’t really see that reflected in the literature. What is in the literature may not at all reflect my ET. It might not reflect yours. That puts an additional burden on each of us to communicate how ET affects us for our own sake, and to build the knowledge base about how ET affects people. I’m hoping we’ll make progress in understanding and treating what we now call ET. It’s going to take new research – but it’s also going to take persons with ET speaking up about what matters most.

——-
Dr. Catherine Striley is a professor of epidemiology at the University of Florida, Gainesville and has had ET since her early childhood. She therefore has the condition while being a member of the medical community.

Your Donations Sought to Support Essential Tremor Projects

For the past two years. HopeNET has not actively solicited donations. We have been able to do so because we are an all volunteer non-profit.

However circumstances have changed due primarily to two projects:

* A formal study of Essential Tremor and balance and gait. There has been very little research on this issue even though it is a critical issue facing many who have ET. The study is tentatively scheduled to begin this fall. It will be conducted by Janice Sallitt, PT, DPT, NCS. She specializes in Orthopedic & Neuro PT. The study will center on HopeNET’s Columbia, Maryland ET support group.

* In an attempt to increase awareness of Essential Tremor, Mary Cae Asay is going to produce a play about Katherine Hepburn. Because of Mary Cae’s ET, she can make her voice sound identical to Hepburn’s.

More details will follow. These are very exciting times for HopeNET. Please continue to follow our Facebook and Blog as HopeNET continues to take active steps aimed at improving the lives of those with Essential Tremor.

Your donation will be greatly appreciated.

Peter

On Being a School Teacher with Tremor

“Mrs. Slaughter, why does your head shake?”  You have to just love the power of observation that children have, especially middle schoolers. With this seven word question my journey with essential tremor became a topic that I really wanted to just keep private. This was 12 plus years ago.  The first neurologist I went to actually knew something about ET. Reassured by the doctor that it wasn’t Parkinson’s disease and with my Primidone prescription in hand my journey began. With that blunt question from a student I knew I could no longer keep my “problem” a secret.  So this was the beginning of the wonderful first days of school explaining in each class why they would see my head shake. Not something I wanted to deal with but again children are very curious and won’t stop the questions unless they get a satisfactory answer. So for the next few years medication controlled the tremors to some degree but they were always present and needed at times to be explained, even to the parents.   Parents quite understandably want the best for their child but in many ways, deep down; I felt this was an invasion of my personal life but what can you do when it is so visible.  A couple of years ago when the Primidone no longer was helping and the stress level from teaching was causing the tremors to magnify, I retired.   I now have a new neurologist, a more accurate diagnosis of dystonia, no longer take Primidone and am seeking a different method to control the tremors.  I would love to end this with I was cured but if you have ET you know that is not the end of this story.  So I will continue to become better educated about this inconvenience and laugh at myself sometimes so I can remind myself that I am strong enough to keep doing all the things I want to do for as long as I can.

— Mary Jane Slaughter

Tai Chi for Essential Tremor Class Started

Dr. Sean Vasaitis is a professor at the University of Maryland Eastern Shore. He is a young man who has had Essential Tremor since he was a child. He found that Tai Chi was an effective treatment for his ET. He consequently undertook an extensive program to learn Tai Chi. This involved a number of trips including this past winter to Northwest China to learn from the real experts of Tai Chi.

He is conducting a formal study of Tai Chi as a treatment of ET. He is using HopeNET’s Silver Spring ET support group as a test group. Yesterday, April 28, was the first class. It was conducted at Leisure World Maryland. Renee, a faithful member of the group, sent me this message below.

If you are interested in participating, please let me know.

— Peter

 

ReneesNote

Dr. Dietrich Haubenberger of NINDS/NIH Gives Presentation On ET Outlook

title-page-et2016-presentationWhen we founded HopeNET 5 years ago, we felt that the thing that the ET community needed most at that time was HOPE – hence the name. In the meantime, we have strived hard to bring some hope to all with ET. Accordingly, HopeNET played a key role in having the ET conference at NIH in May 2015. Since that conference, there has been a big increase on the part of industry in developing new treatments for ET. Dr. Dietrich Haubenberger of NIH is probably in the best position to know what is going on with ET. He came to the Falls Church, Virginia ET support group on October 14th and made the attached presentation, Essential Tremor 2016: A look into the pipeline. There has never been a better time than right now for hope – for all of us in the ET community.

— Peter

Dr. Dietrich Haubenberger of NINDS/NIH Gives Presentation On ET Outlook

title-page-et2016-presentationWhen we founded HopeNET 5 years ago, we felt that the thing that the ET community needed most at that time was HOPE – hence the name. In the meantime, we have strived hard to bring some hope to all with ET. Accordingly, HopeNET played a key role in having the ET conference at NIH in May 2015. Since that conference, there has been a big increase on the part of industry in developing new treatments for ET. Dr. Dietrich Haubenberger of NIH is probably in the best position to know what is going on with ET. He came to the Falls Church, Virginia ET support group on October 14th and made the attached presentation, Essential Tremor 2016: A look into the pipeline. There has never been a better time than right now for hope – for all of us in the ET community.

— Peter

Essential Knowledge Gaps in the field of Essential Tremor Conference

The conference entitled Essential Knowledge Gaps in the field of Essential Tremor was held on May 11-12, 2015. It was broken into 5 sessions – (1) Phenomenology & Phenotypes, (2) What can we learn from available therapies & what do we need to implement clinical trials and advance clinical research in ET, (3) Physiology of Essential Tremor, (4) Pathology, and (5) Genetics.

For each of the above discussion points, an expert in the respective field made a presentation regarding the topic. The discussion was then open to all of the participants. This was followed by a summary of what had been discussed. As one who has Essential Tremor and is not a doctor, I was impressed by how it was conducted and the points that were made.

I am optimistic. There are big challenges ahead – not the least is – we need a better understanding of what Essential Tremor is. The various working groups will now take their respective summaries and put together a more specific plan for moving forward.

NINDS did a good job with the conference. I am confident that they will continue to play a constructive role in ensuring that follow up occurs.

Peter

NIH Studies into Motor Movement Disorders

On February 12, 2015, Dr. Dietrich Haubenberger, Director of the Clinical Trials Unit with NIH/NINDS, gave a captivating presentation and discussion on Essential Tremor research and its relationship with other motor movement disorders.

While there continues to be research to find a common factor that can be used in the treatment of ET, it has become increasingly evident that ET may be migrating back to an overall descriptive for multiple sub-categories of specific movement disorders that are being discovered and defined in greater detail.

ET vs Dystonia

As the result of more recent research, it is believed that some previous ET diagnosis may actually be Dystonia. Among the key indicators are, if only one side is affected by tremor and has cramp-like features, it would likely will be Dystonia. Areas that can be influenced are a person’s walking gait and head-eye movement coordination.
A number of musicians, athletes in repetitive motion sports, and writers are known to have Dystonia.

The Cerebellum

The Cerebellum, also known as our ‘Little Brain’, is a clearing house center for muscle movement. While it does not initiate movement, it does mitigate the movement and acts as a gentle braking mechanism to allow coordinated motor movement. Otherwise, our muscle movement would be sporadic and uncontrolled. This coordination between initiated neural pulses and the Cerebellum allows constant adjustments and learning adaptation for fine motor movement.

Time went by quickly during Dr. Haubenberger’s presentation and we all look forward to further presentations and discussions with him in the future as his research continues.

Bruce Edwards
Falls Church Support Group

What Physical Therapy Can Do To Help You With Balance If You Have ET

We had our Falls Church support group meeting at Little River Glen Senior Center March 14, 2013. Our speaker was Jordan Tucker, DPT, Fair Oaks Hospital, Outpatient Clinic.  Below are notes and handouts from that presentation.

Balance is often a problem for people with ET.  Decreased strength and flexibility, which often come with ET, can adversely affect balance.  Flexibility is important because the ability to stretch one’s leg, calf, and chest muscles affects balance.   Similarly, lack of strength to easily get out a chair can result in falls.  Scoliosis and gait issues may make the body lean in one direction, throwing you off balance.  ET sufferers also have more trouble dual tasking, i.e., walking and talking or walking in one direction and looking in another.  Ankle instability, high or low arches, knee or gait issues, weak ankles, and hip problems also affect balance.  Physical therapists work with patients to deal with all these problems.

Physical therapists experienced in working on balance with patients who have neurological issues tend to be found in hospitals.  Call your local hospital to see if they offer it.  Be aware that, if you are on Medicare, there is an $1800 cap on PT.  However, there are exceptions to this limit, such as a change in your diagnosis or treating multiple problems.

Physical therapy involves an initial evaluation followed by a plan for exercises done with the therapist and a plan for exercises to do at home.  The course of treatment will take place twice a week for two weeks or longer.  It typically involves stretching, strengthening specific muscles as needed, and balance exercises.  You can get a prescription for physical therapy from any doctor – your primary care physician as well as a neurologist. Just ask.

Physical therapy can retrain the three systems that have to do with balance:

  • Eyes and vision – cataracts can be a problem affecting balance
  • Feet – neuropathy (pain and tingling in extremities) interferes with the feedback from your feet that helps maintain balance
  • Brain – reaction times

Tai chi, yoga, Pilates, and water therapy are also useful in improving balance.  Jordan Tucker suggested joining a community exercise group.  She also said that people with ET and balance problems may benefit from using a cane, a walker, or walking sticks.

An audience member said that he uses walking poles successfully.  They are available in sporting goods stores, but the poles in sporting goods stores tend to have narrower rubber tips than the ones sold online for balance.  He found information about poles at http://polesformobility.com/  and selected poles made by Tom Rutlin at http://www.walkingpoles.com/content/view/28/40/.  The poles are pictured below (but picturing smaller tips than those used by the audience member).

Group of people walking using walking sticks for balance.The audience member said he wears a backpack to carry things since his hands are engaged with two balance poles.

Jordan Tucker handed out a questionnaire on balance confidence and a home safety checklist with tips on using stairs, railings, grab bars, and avoiding reaching for far-away objects (which we may do in the kitchen).    Some obvious points are often overlooked, such as the need for good lighting in the home, especially near stairs. Night lights in the bathroom can be useful, too.

Her presentation and two handouts that she passed out are listed here (pdf format):

How a Physical Therapist Can Help Increase Your Balance

Home Fall Prevention Checklist

The Activities-specific Balance Confidence (ABC) Scale*

Joyce Letzler, Support Group Member

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.