March is National Essential Tremor Awareness Month and throughout the month we will be shining a light on people who have essential tremor. Everyone has a story to tell. We hope that these stories will resonate with others, validating the everyday struggles people with ET feel physically and emotionally. As we shine a light on these individuals, we are shining a light on ET and raising awareness. Please share these stories with others.
Fred’s Story
Fred was diagnosed with essential tremor (ET) at the age of 62. That was just two years ago, and yet he has had tremors since he was a teenager. His grandfather had ET it and his sister has it. He said they all have always just adapted the best they could.
Unlike many people afflicted with ET, Fred didn’t let it stop him from going out to dinner, even though he couldn’t get a spoon of corn or peas to his mouth without spilling them. He remembers going through the buffet line at his nephew’s wedding and struggling to serve himself because of his trembling hands. Though he admits that his handwriting has never been good, it finally became so illegible that even HE couldn’t read it.
“Taking communion at church got harder and harder,” he recalled. “And fine detail work, such as holding very small screws, became impossible.”
Fred applied for “reasonable accommodation” at work, where he is a water treatment operator. Under the Americans with Disabilities Act (ADA), employers are required to provide “reasonable accommodations” to qualified employees with disabilities. It gave him a sense of relief to know others were aware of his condition and that they would provide accommodations to support him in his work.
Through the years, Fred said what helped him cope the most with his ET was his faith and becoming comfortable enough to accept his tremor. He also sought support through the IETF’s Essential Tremor Awareness Group on Facebook.
“When you hear what other people with ET are going through, it kind of relieves the frustration you are going through,” he said.
Medication has never provided him much relief, and like many others, Fred saw his ET worsen with age. He got to the point where he knew he had to do something to get relief. So he went online and did some research on surgical options, then visited with his neurologist about Deep Brain Stimulation (DBS) therapy. After learning he was a good candidate, he underwent surgery a year ago. Today he said he has his life back.
DBS therapy involves electrical stimulation to the brain through an electrode planted deep in the VIM (ventralis intermedius) nucleus of the brain called the thalamus. The implanted electrode is connected to a neurostimulator (battery) which provides the appropriate amount of electrical stimulation to control the tremor.
Today there are still times when Fred shakes a little, but not to the degree he did in the past. A small, but important thing he can do now, is serve his wife a cup of coffee.
“I’m excited to tell people about my ability to manage my tremor through DBS. There is hope out there,” he said.
I have had tremors for at least 30 years and now at the age of 67 they are to the point that you were at. My doctor wants me to do the DBS but it scares me. Can you tell me what it has helped and what you don’t like about it?
Carlene