I don’t know about you, but I am inspired by people who see a need and then take action to try and meet it. Their actions don’t always succeed, or have outcomes they didn’t expect, but that’s not the point. It’s the example they set by committing themselves to the task at hand, and achieving as much as they can, that heartens and encourages me.
Here are four recent instances in which a person with essential tremor (ET) rose to the challenge of improving life for themselves and others with ET.
A 61-year old grandmother from Scotland’s northern coast, Mary Ramsay has had tremors since birth. As the tremors progressed, her world shrank. She became fearful of ridicule from insensitive strangers, and increasingly physically incapacitated. She eventually chose to undergo treatment with Deep Brain Stimulation (DBS) and traveled to the closest location, a hospital 500 miles away in Newcastle, England. Thankfully, her National Health Service (NHS) benefits covered the surgery, but she still had to deal with funding her travel expenses.
Following her procedure, she realized that many people with ET would find it too invasive and would instead be attracted to a noninvasive alternative called MRI-guided Focused Ultrasound (MRgFUS). However, its only location in the United Kingdom, St. Mary’s Hospital in London, has a waiting list of up to 4 years! Determined to make MRgFUS available in Scotland, Mary has taken on the equivalent of a political campaign. She now works to muster inter-party support for a motion introduced in Parliament. The motion urges NHS to fund £1.5 million (roughly $2,145,000) to place MRgFUS equipment in Scotland.
Elizabeth Materazzo is a nursing administrative assistant at O’Connor Hospital in Delhi, NY. Her childhood tremors were not correctly diagnosed until she was 20 even though her father had ET, which is commonly hereditary. Like Mary Ramsay, Elizabeth chose to have DBS four years ago, which was successful in her case. However, she fully understood the embarrassment and humiliation that springs from the judgments of others who are unaware of this condition. Elizabeth observes that even many doctors are uninformed of ET, especially in the young.
Her goal is to spread awareness of ET and to support others who feel alone with their condition. Her particular interest includes online support groups, where she has already been able to make a difference helping a mom get her son correctly diagnosed.
It’s pretty amazing when a movement disorder can lend shape to a young person’s college goals. Allison Dyke is a communications major at Kuyper College in Grand Rapids, MI. Having been diagnosed with ET at age 4, her childhood was filled with obstacles that held her back from many activities. Then, as a high school sophomore, she discovered the International Essential Tremor Foundation (IETF). Through them she was able to equip herself with resources to share with her teachers and others. As they became more educated about ET, they were able to work with Allison, helping her to help herself.
Now, using her communications resources to polish her skills and determination, she is speaking out on behalf of other students and adults. In addition, she and her mom facilitate an ET support group in her Western Michigan area.
Like many people with ET, Doug struggled with tremors for most of his life. However, he did not let “the shakes” deter him from becoming a high school teacher and coach, winning a national transformation competition for transforming his body, and becoming an online fitness coach. After learning about MRgFUS from the Essential Tremor Treatment Education Center, he attended a webinar featuring Dr. Tierney (a member of the Sperling Neurosurgery Group), and opted for this treatment performed by Dr. Tierney.
Following his treatment success, Doug launched a Facebook LIVE talk show called “Tremor Chats” at Doug’s Couch, airing every Wednesday at 7 pm Eastern. His guests include patients, neurosurgeons and medical professionals knowledgeable about ET, and he covers all areas of concern as well as treatment modalities.
The Sperling Neurosurgery Associates is proud to offer MRgFUS for essential tremor. This FDA-approved outpatient treatment is noninvasive, and uses the power of a thousand beams of sonic energy (ultrasound) to interrupt tremors at their source in the brain without damaging other brain structures. The results are immediate and durable. Contact us for information.