Patient perspective: An artist with essential tremor

INTRODUCTION — This topic was written by an individual patient diagnosed with essential tremor (ET). It is intended to offer clinicians insight into the experience of a single individual from that individual's point of view. This description of a particular patient's experience is not intended to be comprehensive or to provide recommendations regarding diagnosis, treatment, and/or medication information. It is not intended to be medical advice or to be a substitute for the medical advice, diagnosis, or treatment of a health care provider based on the health care provider's examination and assessment of a patient's specific and unique circumstances.

For related clinical topics, please see:

●(See "Essential tremor: Clinical features and diagnosis".)

●(See "Essential tremor: Treatment and prognosis".)

●(See "Surgical treatment of essential tremor".)

UpToDate also offers patient education materials. "The Basics" topics are short overviews written in plain language, at the 5^th to 6^th grade reading level, that answer the main questions a patient is likely to have about their condition. "Beyond the Basics" topics are written at the 10^th to 12^th grade reading level and are intended for readers who are seeking more detail and are comfortable with some medical terminology. You can share this content directly with your patients:

●(See "Patient education: Tremor (The Basics)".)

●(See "Patient education: Tremor (Beyond the Basics)".)

BACKGROUND — I am an architect, author, and an artist. I am interested in design and art theory, light and shadow in art, and how the work I do fits into the continuum of art history. I make drawing and sculpture. My work gives meaning and satisfaction to my life. To be unable to do the work I love would be devastating.

Early symptoms — I first consulted a neurologist 15 years ago about a few small issues that were troubling me. When I typed, I would sometimes strike the keyboard multiple times instead of just once. My left hand had begun to shake years before, but the intensity had worsened to the point that it was affecting my ability to draw and eat. My right hand was fine. I had also started to stagger when walking occasionally, and I was afraid to turn quickly for fear of falling.

The neurologist did a full examination, testing my thinking and memory as well as my movements. He watched me walk down the hallway and had me draw a spiral around a dot, both right-handed and left-handed. I recall that the left-hand spiral was shaky.

The neurologist's impression was that I had early Parkinson disease, and he prescribed a small dose of levodopa to see whether it would help any of my symptoms. It did not, and I stopped taking the drug. He said I should make an appointment with him in six months to see if any of my symptoms grew worse or better over time.

Revised diagnosis — I continued to see the neurologist every six months for the next five years, and my condition stayed about the same. The doctor ultimately concluded that my symptoms were more consistent with ET, and that Parkinson disease was less likely. He offered treatment for my tremor, but I declined, saying that as an artist, I liked the shake. It made my drawings a little more interesting.

TREATMENT

Self-guided treatment trials — When the neurologist I had been seeing retired, I began to reconsider the need for medication. The tremor in my left hand had grown steadily worse. I had a significant quiver that ruined the control I once had making intelligible lines. In addition, when I tried to bear down on the drawing surface to reduce the quiver, my pencil or oil stick would shoot off the page or jump position.

I started to research ET on my own, and I discovered that high doses of propranolol were an effective treatment for the tremor. I was already taking propranolol for an irregular heartbeat, so I talked to my cardiologist about increasing the dose. He agreed, and for some time my tremor improved.

After several years, the propranolol dose became less effective. Drawing was very difficult, and typing had become almost impossible, producing results that were unacceptable to me. Eating grew to be a frustrating experience; I could hardly use a fork because the food would shake off into my lap before it reached my mouth. To eat at all, I had to use a big spoon.

My cardiologist became concerned that the side effects of propranolol would interfere with my arrhythmia. Reluctantly, I stopped taking the drug and looked for alternatives. I did not know of any other medication treatments for ET, so I explored mechanical solutions. I tried a weighted glove, which extended up my left arm to the elbow. It did prevent some shaking, but it was physically tiring to use, and it made my main activities of drawing and typing more difficult. Eventually, I gave up on it.

Arrival at surgical options — As my condition worsened over the years, medications and mechanical solutions were no longer sufficient. My tremors were interfering with all aspects of my life, including my ability to work as an artist and writer. I needed a more aggressive solution that would allow me to resume my creative interests.

It appeared the best option for me was deep brain stimulation (DBS) surgery, which offered the chance for improvement on both sides of the body. I had also considered focused ultrasound treatment, but it had the drawback that it could only be performed on one side. I am left-handed, but I also use my right hand often when drawing, so one-sided treatment was unsatisfactory for me.

I located a neurologist to see if I would be a candidate for this treatment. I had several meetings with the neurologist to evaluate my tremor, my balance, and my cognition. The doctor informed me of the risks and the fact that DBS was not a permanent solution. My tremor could reappear in the years afterwards. I also would have two batteries in my chest that would need to be replaced with another surgery in 5 to 10 years. I would have permanent scars on my head and wires in my body that extended from the batteries to my brain.

It was a lot to think about, but after days of thinking about the surgery and the possibility that I could end the tremor that was making me nearly an invalid, I decided to proceed. The neurologist referred me to a neurosurgeon, who explained the surgery and its consequences in more detail. I was warned about issues that could arise because of the DBS surgery itself, such as balance problems. He candidly told me the surgery was not likely to result in a permanent cessation of the tremor. Over the course of years, the tremor could increase. The increase could be small or large, depending on the individual, but the immediate result would be a substantial decrease.

The procedure itself — The surgery went smoothly. I was asleep throughout the procedure, which pleased me. (I had understood that some doctors perform portions of the procedure with the patient fully awake.) After a night in the hospital, I returned home with wires into my brain and batteries installed in my chest.

The following day, I went to the surgeon's office for the first calibration of the batteries. The device manufacturer's representative installed an application on my phone and demonstrated its use. Using a tablet, the nurse practitioner turned on the stimulator, sending a current to both hemispheres of my brain. A pleasant vibration passed down my left arm and then down my right arm. After a few minutes the vibration ceased. Stretching out my arms, I had a small quiver in my hands and a very slight shake in my arms. The nurse practitioner manipulated the amount of stimulation to a point where my hands and arms were steady. She had me walk up and down the office corridor to see if my balance was off. It didn't appear to be.

Back in the examination room, she showed me how I could manage the stimulation myself using the application installed on my cell phone. She informed me that the DBS was calibrated to a certain level, which I should not exceed for safety reasons. The calibration has been increased several times without problems. Within safe ranges, I could manipulate the amount of stimulation should I experience an increase in the tremor. I returned home happy that I had gotten my life back.

Complications — One complication of DBS surgery was that my balance worsened. The severity of this condition was a surprise to me. I was forewarned that I could have balance problems, but I was not prepared for the extent of the problem.

I was referred for physical therapy and was trained in a series of exercises to improve my gait and my ability to stand in one place without staggering. I continued therapy for several months and practiced the exercises. My symptoms worsened when I traveled for a few months and couldn't keep up with the exercise schedule. I began to walk with a cane to steady myself.

I went back to therapy when I returned home and have continued for over a year. I walk almost every day, weather permitting, but I use walking poles (like ski poles) to steady my gait. I have improved my balance in part by standing on a foam pad, which is sensitive to the pressure of my feet. I try to maintain balance with steady pressure in my feet while my eyes are closed, and I move my head side to side and up and down. The therapist makes the situation a little more difficult each week if I show progress. After a year of therapy, I have progressed with my balance to the point that I no longer have to walk with a cane. I still have a long way to go to remaster my balance completely, which comes naturally to those without ET.

I have noticed a few other issues since I started physical therapy. The volume of my voice has become lower. To be heard, I must almost yell. The tone of my voice has become more gravelly. I have noticed that I am much stiffer. It is difficult to raise my arms above my head.

Stress and tension in the body make my symptoms worse. My tremor returns if I become stressed by life events. Stiffness in the muscles can bring on problems with my gait. Therefore, I do stretch exercises.

Follow up — In the two years since my DBS surgery, I have had to increase the amount of stimulation several times. Increasing the stimulation always begins with a vibration in the arms, which fades away just as the tremor recedes. Three times I have returned to the neurosurgeon's office to have the upper range of the stimulation increased to mitigate the shaking in my left hand, and each time the tremor has reduced back to zero.

A side effect of the increased stimulation is that my balance on the left side becomes worse because I drag my left foot, and my right ankle tends to turn under. Each time I must retrain my coordination, but the retraining doesn't take as long as it did after the initial DBS surgery. Balance when I turn remains an issue.

In general, I am very satisfied with my decision to undergo DBS surgery. It has given me back what I most feared losing: the ability to do the things I like – drawing and writing. When I'm due for a stimulator adjustment, I deal with the increased tremor by drawing with two hands until the device is adjusted. Since my last adjustment, my left hand is steady when I position it to draw or write, but the tremor emerges in certain positions, like when I raise my arm high over my head, drop my hand to the side, or raise it to my mouth. This condition seems to reflect a stiffness in my arms.

COMMUNICATION — Communication with my doctors has been excellent. My own research has also been helpful to understand what ET is and what alternative therapies exist. New equipment seems to come on the market with increasing regularity. Doctors and researchers could help more by understanding the subtleties of ET and how it can affect simple functions like walking, turning, and balancing.

I believe a patient should be their best advocate. Patients can inform themselves through information available on the internet. Reading up on ET helps one make wise decisions with their doctor. I find the most helpful information on the internet is the experience of others who have ET. The clinical descriptions of the condition are often too medical to provide an understanding of what a person with ET can expect. Even more helpful for me has been talking in-depth to a patient with ET about his own experience with DBS.

I am fortunate that I have not had problems with health insurance. Medicare and supplemental insurance covered the costs of my consultations, surgery, and follow-up visits. Even the costs of rehabilitation with a physical therapist have so far been partly covered, although continued treatments need to be approved by my neurologist and I assume will not be covered indefinitely. Hopefully, I will have learned the exercises to continue making progress on balance and walking.

IMPACT — ET has had tremendous effects on my life. Use of my hands is critical to my professional work as an author and artist. Without the ability to type and draw, I would lose what is most important to me. Unanticipated problems with balance after DBS now present a major worry because I am over 70 years old and am at high risk for fractures if I fall.

RESOURCES — I have two resources to mention:

●I believe that fellow people with the condition are some of the best resources for patients. If peer groups aren't available locally, patients can start their own group. They will be surprised by the number of folks who suffer from ET.

●The best resource to learn about others with ET and keep up on medical advances and treatments for tremor is the International Essential Tremor Foundation (IETF). This group has workshops and seminars about the tremor and how to deal with it, and their magazine, Tremor Talk, is always packed with useful information.