I was 60 at the time. Trying to take a photo. My hand was shaking so much I couldn’t hold my phone still to capture a picture.
“I’m just nervous,” I thought to myself. The same experience happened again and again. “It’s just stress; I just need a good night’s sleep, and everything will be fine,” I concluded.
Over the years, my hands began shaking so much handling utensils, a glass of water or a ballpoint pen that it was embarrassing to eat in public or be at in-person business meetings.
My shaking got progressively worse to the point that people I was with not only noticed but asked, rather pointedly, “What’s wrong with you? Why are you so nervous that your hands are shaking?”
After repeated embarrassing questions, I finally asked my primary care doctor about it in 2019.
“I’m reasonably sure you have essential tremor,” she said. “Do you want me to refer you to a neurologist?”
“NO!” I replied.
The thought of seeing a specialist would make my shaky hands too much of a major “thing.” Instead, my primary physician prescribed a medication I hoped would calm the shakes. Six months brought no changes. Another medication; still no change.
Official Diagnosis
When the shaking became even more apparent in early 2021, I finally agreed to see a neurologist. He had me try to hold a glass of water, draw some spirals and write my name. It was then I received an official diagnosis of essential tremor, a condition usually characterized by tremors in hands, legs or head.
Essential tremor is similar — but different — from Parkinson’s disease in that the former is usually apparent when you’re doing something active, such as reaching, lifting, handwriting, walking or speaking. With Parkinson’s, there is usually an “at rest” tremor.
I learned that while one million Americans suffer from Parkinson’s disease, approximately 10 million Americans suffer from essential tremor. Why is “PD” so well known when relatively few have heard of “ET?” Chalk that up to Michael J. Fox and the tremendous awareness campaign of his charity and the well-staffed and well-funded Parkinson’s Foundation.
The neurologist then referred me to a movement disorder specialist. This physician prescribed increasing amounts of a different, third medication. Ever hopeful, I eagerly awaited being able to calmly hold a glass of water. With each doctor’s appointment, the embarrassing tests of being unable to sign my name, draw a spiral, pour a glass of water or do basic tasks made me shrink further into myself.
After three drugs with no results, what do I do now?
“Brain surgery,” was the reply.
“WHAT? No way, no how, not ever!” I replied. It took me about a year to wrap my head around the idea of brain surgery while I kept waiting for each new medication to work.
I consulted “Dr. Google.” I became a “student” of essential tremor. I participated in online webinars. I researched and read about treatment options. I researched wearable devices and focused ultrasound alternatives. I participated in a clinical trial that focused on Botox injections. Then, in June 2022, I attended an in-person seminar with Boston Scientific’s local Ponte Vedra rep, Alaine Keebaugh, Ph.D. She and Dr. Philip Tipton of Mayo Jax went through the Deep Brain Stimulation (DBS) procedure. That presentation literally changed my life.
DBS has been used for many years and involves implanting electrodes in the brain to help regulate the abnormal brain activity causing the tremors.
Based on my research, I had already concluded that DBS, a proven, safe, practiced-for-over-20-years procedure, was the best next step for me. I was ready to say yes. Even with the frightening fact that during DBS, I would be wide awake while the neurosurgeon drilled through my skull to implant a thin narrow wire called a “lead,” I thought, “Bring it on!”
But there are a lot of people in Jax in line to have DBS. So, there was a wait. I had to go through various pre-surgery reviews and tests. In retrospect, the delay was a good thing. I was so frightened at the prospect of brain surgery that it gave me adequate time to get mentally comfortable and to hear the first-hand experience of others who had the procedure. My teeth were chattering so loudly when my sister drove me to the hospital in early January 2023 for my DBS surgery that I was concerned the surgeon would shoo me out of the OR. But they clamp your head into a frame so there was no issue.
Despite my fears, I enthusiastically say to others considering DBS: Do not be afraid! It does not hurt! There is a momentary vibration, but honestly and truly, there isn’t pain. Several days later, a second surgery implanted the battery (called the “stimulator” – sort of similar to a pacemaker) in my chest. DBS patients are put to sleep for this second stage of surgery, so it’s easy. Once the stimulator’s settings are established, voila! Everything changed!
Suddenly, I could hold a glass! I could reach for something without shaking. I could sign my name legibly. And yes … those darn spirals … I could even draw a spiral! It was a marvelously successful surgery. The surgery for my left hand happened six months later, and I am now virtually tremor free.
One of the great joys of my life is leading a support group in Ponte Vedra for people with ET and their family members, friends and loved ones. We meet every two months at the Baptist HealthPlace in Nocatee. If you suspect you have ET, you are more than welcome to join us! Jan Kary, jkary@verizon.net
