Is Having Essential Tremor a Real Risk for Falls?


By Dr. Janice Sallitt, PT, DPT, NCS / JVS Rehab.

The answer to the above question is not a simple yes or no!

As is often the case, it depends on several factors: one of them being where the tremor is located in an individual. The most current medical view is that Essential Tremor (ET) is a syndrome, with tremor being the most obvious symptom. In some cases, it may be the only symptom.

Recent research has shown that tremor of only 1 arm did not show increased risk for imbalance; tremor of the head, jaw, and/or voice did show increased imbalance and fall risk.

Another factor in increased fall risk and/or increased imbalance in a person with ET is age. Persons with ET who are older than age 70 also correlated with increased imbalance and higher fall risk.

At this time, there is little evidence to show the effects of a physical therapy balance/fall prevention program in people with ET; however, in other neurological syndromes, there is a significant amount of evidence over the past 2-3 decades showing decreased fall risk. There is an assumption that, if studied, there would be a high probability that a similar physical therapy program to address the balance deficits would help to lower fall risk.

I hope you find this information helpful and that we can begin much needed studies in this area of ET.

(The above information was a summary of my June 2nd talk to the ET support group in Howard County, MD.)

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

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.

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

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