After 50 Years of Battling ET, My Life is a Series of Daily Miracles

By Mark Honeyman

My journey to DBS surgery was a long time in the making.

I’ve battled essential tremor since I was a young boy. When I was 12 years old, I had to give a speech for one of my classes, and I noticed that my hands were shaking far more than even the most nervous of my classmates. However, I chalked it up to a quirk of how my body responded to stress.

It wasn’t until I got to high school that my shakiness was magnified in a vivid but destructive way. I was required to give a presentation for history class, and the teacher refused to let students use a podium or a binder or a full sheet of paper. We could only use 3×5 cards. With nothing to brace my hands on, and only flimsy notecards to hold, I shook uncontrollably. After I was finished, my teacher grabbed the set of note cards out of my hand and mocked me in front of the entire class by saying, “Wh-wh-wh-who m-m-m-me, n-n-n-nervous??” while flapping his hands dramatically. I was devastated. From that moment forward, I was profoundly and painfully aware of my shaking, and it traumatized me.

Looking for Answers

For years, I beat myself up for being a weakling who couldn’t handle life. Every time I was nervous or excited or angry or in a hurry, my hands and even my head would shake wildly. It was humiliating, but even more so, it was crushing to think that I had some character flaw that manifested itself every time I was under pressure or experiencing some extreme emotion.

Complicating things is the fact that I was adopted, and nobody in my adopted family had a movement disorder of any kind. I didn’t have any family history to fall back on to understand what was happening to me.

It wasn’t until my early thirties, when I had begun to experience head and trunk tremors in addition to my arms and hands, that I finally decided to seek medical attention. I made an appointment with a neurologist, and I got lucky, because the neurologist just happened to be a movement disorder specialist. After just a few simple tests, he diagnosed me with a classic case of essential tremor, and a very advanced one considering my age. I actually wept with relief that I finally knew my enemy, and it wasn’t me. I didn’t have some moral defect – I was suffering from a legitimate neurological disorder.

Trying to Manage My Symptoms

Over the years, I tried a host of remedies to relieve the symptoms of my condition. First came the drugs: beta blockers (propranolol), anti-seizure meds (primidone, neurontin, topamax), and even Klonopin. Klonopin was the only drug that brought any real relief of symptoms, but it also made me incredibly tired. At one point, I even fell asleep at the wheel of my car. Thank God I was inching along in a snowstorm on a side road, or I might have killed myself or somebody else. As it is, I pushed a 3,000 lb SUV off the road, and when I got out to exchange information with the driver, I saw a baby seat in the backseat of his car. The child wasn’t in the car at the time, but I went home that night and threw out my remaining pills.

Aside from medications, I tried adaptive devices such as weighted silverware, a special mouse for my computer, uniquely shaped pens, weights for my wrists, etc. I even tried Liftwear, but the amplitude of my tremors outpaced the device’s ability to counteract them. I tried Eastern medicine: meditation, acupuncture, etc. No matter what I tried, nothing worked.

Reaching a Breaking Point

Finally, in my mid-40s, I abandoned all attempts to reduce the tremors, and decided to just live with the condition. But I made myself a promise: If it ever got to a point where I was having trouble feeding myself, I would consider surgical intervention. I was aware of both focused ultrasound (FUS) and deep brain stimulation (DBS), but I only ever considered DBS because FUS burns away brain cells irretrievably while DBS is reversible.

I continued to gut it out until the age of 61, where I reached my breaking point. I was attempting to eat a bowl of cereal, and I kept ramming the spoon into my gums, bouncing it off of my teeth, pouring cereal down the front of my shirt, and smearing milk all over my face. I finally turned to my wife and said, “I can’t live like this anymore. I’m emotionally and physically exhausted. I want to get the surgery.” 

Beginning My DBS Journey

And so began my journey to DBS. I made an appointment with a neurosurgeon, and we discussed the procedure. I am profoundly claustrophobic, and the thought of being put in a halo, as well as an MRI machine, left me unnerved. Thankfully, my surgeon has experience with the fully anesthetized version of the surgery, which I immediately opted for.

Before I could even qualify for the surgery, however, I had to go through a number of tests. The first step was five or six hours of neuropsych testing. The second step was a brain MRI. The third step was a speech evaluation. Each of these steps was intended to ensure that I didn’t have some larger underlying health concern that would need to be addressed before DBS could even be considered. Thankfully, all of my testing indicated that there were no issues that stood in the way of me proceeding with the surgery.

The first stage surgery was set for September 13, 2022. That is the stage where they mapped my brain using a special MRI machine embedded in the operating room, and threaded a hair thin wire filament through the top of my head down into my thalamus. I decided to go with bilateral surgery, meaning that both sides of my brain would be operated on so that I could regain the use of both my left and right hand.

The stage 1 surgery took about five or six hours, and I didn’t suffer any complications. There was a brief honeymoon period for about 2 hours after the surgery where my tremors virtually evaporated. Apparently this is not an uncommon occurrence, where the patient experiences relief from their tremors for a couple of hours up to a couple of days, because the placement of the wires creates a temporary disruption of the signals the brain is putting out that cause the tremors in the first place. It was nothing short of miraculous, where I was suddenly able to raise a glass of water to my lips without dousing myself for the first time in years.

I only stayed one night in the ICU, and then I was sent home. Pretty remarkable, considering they were poking around in my head 24 hours earlier. The first night, getting to sleep was a challenge because I kept seeing odd geometric shapes and other unexpected images whenever I closed my eyes. This dissipated by the second night, however. Within a couple of days, I was off of all pain meds and was quite comfortable. I began walking short distances, and within a week of the surgery, I was walking three or four miles at a time. I didn’t experience any problems with appetite or focus. I even held a couple of remote tutoring sessions to help some students with their college essays. It was fun to show off my scars.

I went in for the second stage surgery on September 29, 2022. This is where my surgeon took the opposite ends of the wires that had been implanted in my thalamus and burrowed them under the skin of my neck into my chest where they had created a cavity for the pulse generator (battery pack). They attached the wires to the battery pack and then sent me home. It was an outpatient procedure that took about an hour. My chest was pretty sore from where they created space for the battery pack, but otherwise, I was not in any discomfort at all. Again, within a couple of days, I was off of all pain meds and back to a fairly regular routine.

The first two stages installed the necessary hardware, but I still wasn’t experiencing any tremor relief.

Relief at Last

That’s where the third phase of the process came in. About 2 weeks after my stage 2 surgery, on October 13, 2022, I paid a visit to my regular neurologist. He turned on the battery and began the programming process. First he started with my right hand side, and the second he turned on the battery and began adjusting the current, my tremors virtually evaporated. Tears rolled down my face as I saw my hand stop shaking. A condition I had fought for nearly 50 years had been brought under control. It was magical. 

Then we isolated my left side and began the process all over again. Within seconds, I experienced the same relief as I had on the right. 

Finally, my neurologist activated both the right and the left side at the same time. Both of my arms and hands stopped moving. On top of that, my head and trunk tremors virtually disappeared. (This is a wonderful extra benefit that sometimes arises when someone has bilateral DBS). It was as if my entire body exhaled. I was still for the first time in five decades. My neurologist, who gets to experience this with all his DBS patients, smiled at me and said, “This never gets old.”

After the appointment, my wife and I had a celebratory lunch with some of our family members. I was able to raise a shake-free toast, and bring a spoonful of oatmeal to my lips without having to worry about wearing a bib or chipping a tooth or leaving a trail of it across my cheek. Everyone at the table had tears in their eyes, myself included.

Little but Life-Changing Miracles

While the surgery didn’t completely suppress my tremors, I would say that I’ve experienced at least an 80 to 90% reduction. A week after my neurologist turned on the pulse generator and programmed it to reduce my tremors, I experienced a constant array of little miracles each day:

*I am able to floss without spending 30 seconds aiming for one crevice, and I am able to brush my teeth without ramming the head into my gums or chipping a tooth or smearing toothpaste across the side of my cheek.

*I am able to put on my glasses without

jabbing the stem into my eye or ramming the nose pieces into the bridge of my nose causing it to bleed.

*I am able to shave without going over the same spot seven or eight times because I couldn’t hit what I was aiming at. I may even be able to ditch my electric razor and go back to using a disposable razor without taking my life into my hands.

*I am able to lift a glass of water to my face without dousing myself. 

*I am able to capture food on top of my fork without sending it flying halfway across to the room, and I actually manage to get the food into my mouth before it all falls off again or before having to resort to eating with my hands.

*I am able to take out my morning medications without spilling half of them on the counter or worrying that I am going to poison my dog inadvertently with stray pills left on the floor. 

*I am able to enter the password for my computer without bracing one hand with the other, and on the first try rather than the 10th. And I am able to keyboard messages without tucking my elbows into my body and without hitting as many wrong keys as right ones.

*I was able to try on frames at LensCrafters without having to ask the sales associate to put each pair of frames on my face for me. And when I paid for them, I was able to easily sign the glass screen of their agreement and payment machine, something I have been unable to do for years.

*I was able to fill out an election ballot for the first time in nearly 20 years. I’m not sure I can describe what it felt like to be able to regain the ability, by my own hand, to use my voice as a citizen of this country.

I haven’t felt at ease in my own body for 40 or 50 years, but I do now.

It’s a whole new world.

2 thoughts on “After 50 Years of Battling ET, My Life is a Series of Daily Miracles

  1. Thank you for sharing your story. I was only diagnosed last year, but they’ve become much worse since then Primadone has done nothing for me. I can’t take the main medicine because of my asthma. I’m on so many medication‘s for arthritis, asthma, bipolar, anxiety, and a sleep disorder. I don’t want to take another pill I’m going to talk to my neurologist about DBS. Hopefully I don’t have to wait for my tremors to get much worse to qualify. It sounds like a miracle treatment. I’m so happy it worked for you when you got your life back.

  2. Mark,

    Wonderful writing.

    I’m 73 and have ET for several yrs. It has accelerated and progressively gotten worse in the last 2 yrs. I have experienced all the frustrations that you have, including the school speech humiliation, except my was in 7th grade by a student that yelled out about my shaking and started laughing. Ever since then I was terrified at giving speeches. Long story short, lots of embarrassing moments and frustrations, whereas it has impacted all areas of my life as well as psychologically.

    I have said enough is enough. I was avoiding DBS, as I didn’t like the idea of brain invasion with wires. Focused ultrasound came out and I thought that is perfect, but as I stated studying it and realized the brain burning and potential life long side affects, I thought otherwise. So I’m back to DBS.

    I have had my first interview with the neurosurgeon and now another with the neurologist next month, for dbs recommendation. Needless to say, I am somewhat nervous, but realize living with this stinks. No such thing as writing, holding a screwdriver, flossing, trimming nails etc.

    Long story short, I am so glad I found your article as it gives me more assurance. It was most informative and realize it took you a long time to write.



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