Essential Tremor and DBS are Proving to Be a Challenge that Affect Every Task I Do.

By Carlton Davis

Since my Deep Brain Stimulation (DBS) surgery, three years and 200 days have passed, but several problems continue to plague me. I fall often. Between 2024 and today in June, 2025, I have fallen about 20 times. No injuries have occurred because I could stand by levering myself up using a bed, table, or chair. However, one time I could not get up and my wife had to call an ambulance, and I spent two days in the hospital afterwards. My handwriting, which used to be large and clearly readable, has become tiny and illegible. My voice has become much softer and at times barely audible. I sound hoarse when I speak.

The neurologist who treats me manipulates the level of DBS stimulation, based on my reports of the degree of two issues: the amount of shaking in my hands, which affects my handwriting, and my balance, which causes stumbling when I walk and unbalance when I arise from a chair or bend over to pick up something. The third consequence of the stimulation is its effect on my speech. I go to physical therapy for balance and voice therapy for speaking.

The doctor uses an iPad to change the level and to set the range of the stimulation. The two batteries inserted below the skin in my chest control the stimulation to the left and right sides of my brain and body. The batteries can run down and must be replaced after continued use for as much as five years. The battery stimulating my left side uses more energy than that for my right side, perhaps because my left is my dominant side. I have received warnings that the battery might soon need replacement, but so far, the medical team monitoring my amount of stimulation has not reached the point where replacement is needed. When it does, an operation to remove the dead battery and replace it will be needed.

Each time I visit the neurologist, he sets up a new program for the level of stimulation and dates it for the day of my visit. He has me do several tests. First, I extend my arms out from the torso, hold a pencil, and then bring it in to touch my nose. Depending on the amount of trembling, the doctor adjusts the stimulation level. I can sense the vibration in my face and arm. Then, he has me walk up and down the hall outside the consultation room while he observes my gait. Do I wobble and stumble? Do I hesitate on turning around? I generally have both these conditions.

 I used to think that I had to increase the range of stimulation to offset any increased shaking in my hands or wobbling in walking. Apparently, DBS does not work that way. The doctor sets a limit to the increased amount of stimulation because, as he characterizes it, without setting an upper range there is a danger of damage to the lobes of my brain. Having set an upper range based on his observation of the amount of trembling in both hands and stumbling in walking, the doctor allows for a lower level of stimulation. This was news to me! I had always thought that if the shaking in either hand increased or walking became more difficult, all I had to do was to increase the stimulation level to make it stop. That is not always correct.  When I reach the upper limit of the set  range, I can dial the amount of energy back to a lower level. With his guidance, I tried this and was amazed that the shaking decreased. Yet walking remains semi-difficult. Walking is better at some levels than others, but since the operation my walking has never returned to the ease of former years.

Evidently there is a zone on the electrode in my brain about a centimeter in length that influences body movement and the tremor in the hands. The doctor observes me walking down the hall in his office to see the amount of wobble I have walking and turning. After seeing what the amount of stimulation works best, he attempts to find a “sweet spot” on the electrode where both my shaking and my balance are in optimal equilibrium. When the shake in my hands has reached the upper limit, I have performed this manipulation by myself several times so far. Dialing down the charge or setting where the energy is focused in the brain has proven to be successful.

At physical therapy, I try balancing on a rocker panel for 30 seconds without holding onto parallel bars. Then I try holding for 30 seconds with my eyes closed and a position of feet together one foot partly in front of the other. With a wide rubber band tied beneath my feet I make my way down the length of parallel bars stretching the rubber band and stepping from foot to foot. The therapist has me doing a series of stretch exercises in which I lift an outstretched leg 20 times while the other leg is bent up. With the rubber band tied around my thighs, I exercise 20 times by lifting one leg over the other in what the therapist calls the clam shell. Lying on my back with my legs still bent in the clam shell position, I extend my arms perpendicular to my torso for a count of ten seconds. The stretch is wicked painful as it pulls apart the muscles in my chest. Another exercise has me sitting on the edge of a therapy table with one leg over a corner of the table and the other leg extended as far back as it can go for 30 seconds for each leg. After 50 minutes of these exercises and others, I am exhausted, but my walking is much better for a short while.

The remaining issue I have with essential tremor is the effect it has on my voice. I sound hoarse when I talk, and I no longer speak naturally with gusto. This is similar to the voice issues of patients with Parkinson’s disease. I work with a voice therapist in an attempt to regain the clear and powerful voice I once had. The therapist has me doing a series of exercises. At each therapy session I blow into an “expiratory muscle strength” trainer 25 times. I make effortful swallows 50 times.  I use a rubber ball tucked under my chin, putting pressure on my vocal cords, for five seconds five times. I say “ah” and “somewhere” in a high voice and then in a low voice “ding dong.” I blow through a straw into a plastic cup with about an inch of water and say a short phrase like, “The drug store is open 24 hours a day.” For the final two exercises I try to use a voice that is, as the therapist says, “7 out of 10” in clarity and volume. These exercises are helpful in relearning how to use my diaphragm, posture, and vocal cords to make words and sentences that are clear.

It is clear to me that the conditions of and reliefs for essential tremor are influenced by stress. Mental stress from over-tiredness, hunger, frustration, or anger increases the likelihood of shakes. Physical stress from doing one thing for too long a time, walking too far, or reaching too high or too low increases the likelihood of my being out of balance and falling. I have nearly fallen when I drop something on the floor innumerable times

I have recently begun a program of exercises that includes boxing with a soft round moveable column. The exercise program, which involves a large time commitment, is designed for Parkinson’s patients to help them with their coordination and their ability to implement verbal commands. These exercises are demanding, and I can see how much strength I have lost over the years. I can’t stand from a folding chair without help. Without a thick pad the seat of the chair is too low for me to rise from.  My quads need more work! Stumbling and nearly falling or falling altogether have not been successfully treated so far, and the voice retraining continues, but I remain encouraged by the various therapy modes.

I am stubborn, and I refuse to sit back and be an invalid or recluse. At almost 81 years old I am not finished with my life’s work. I have written a third book and need to be able to stand and speak when promoting my effort. Essential tremor and DBS are proving to be a challenge that affect every task I do.

Thriving after DBS is proving to be more of an art than a scientific experiment.

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Carlton Davis is an author, artist, and architect. Educated at Yale University and the University of London, he had a writing residency at Montalvo in Saratoga, CA in 1988, and was a writer in residence at the Dorland Mountain Arts Colony in Temecula, CA in 1984. He has written several books. His latest, “An Artist’s Life,” is a memoir and collection of self-portraits reflecting on his life.