Patient Spotlight: Kyle Fernandez
I was in kindergarten when my symptoms started. My hands would shake uncontrollably, and my worried kindergarten teacher told my parents that their son “shook a lot.”
At first, doctors thought my shaking was a reaction to the medicine I was taking to treat my asthma. I couldn’t just stop taking this medication, but this turned out to be just the first wrong diagnosis in a long line of them. Next doctors told me that the shaking wasn’t a side effect of any medication I was taking but was early onset of Parkinson’s disease.
In fact, it took nearly 13 years after the symptoms started to correctly diagnose the cause of the uncontrolled shaking in my hands, which was finally and correctly identified as essential tremor. While I was relieved to hear it was not Parkinson’s disease – which I had grappled coming to terms with for most of my adolescent years – I still wasn’t sure what this new diagnosis would mean for me.
With my correct diagnosis, a long discussion began about how to treat my tremors. First, I was prescribed medicine traditionally used to treat epilepsy. It succeeded in mitigating symptoms, but the treatment also made me feel horrible and listless. I felt like a zombie and decided to stop taking the medication and search for alternative treatment.
Next, I looked into an invasive and experimental treatment called deep brain stimulation (DBS). DBS is brain surgery that, long story short, had the potential to relieve my symptoms but could also come with long-lasting and life-altering side effects. I was about to be a college student! Ultimately, I decided that it just wasn’t worth trading one demon for another.
For the next 16 years, I lived with the untreated symptoms of essential tremor. Daily tasks were hard, especially at work where I often had to take small doses of alcohol just to keep my hands steady during meetings and other professional engagements. At times, I wondered whether or not I would be living with this disease for the rest of my life.
All of this suddenly and unexpectedly changed when I learned about focused ultrasound technology (on YouTube of all places!). In the video, a man who suffered from essential tremor was treated with focused ultrasound. I immediately began researching this treatment. I couldn’t believe it was not only non-invasive but also free of side-effects–two factors which had led me to pass on previous treatment alternatives.
My research eventually led me to Doug Couch, a former essential tremor patient who had successfully been treated with focused ultrasound. Meeting Doug was a life-changer. He put me in contact with the Tremor Action Network, which quickly began scheduling screenings, appointments, and everything else I needed to get approved for treatment.
Three months later, I was on a flight to the University of Maryland to finally get my tremors treated with focused ultrasound. Before receiving the treatment, the nurses shaved my head and gave me a special cap to wear. The cap was hooked to the MRI table and was used by the doctor to administer the treatment by targeting specific areas of my brain with focused beams of ultrasound.
When it was all done, the shaking that had plagued me for decades was substantially diminished. The tremors in my left hand were completely gone, and my right hand only displayed minimal symptoms. On the same day of my treatment, I was able to catch a bus from Baltimore to Washington, D.C. Instead of spending weeks recovering in a hospital bed, I was touring the U.S. Capitol and taking pictures of the Lincoln Memorial – while almost entirely free of side effects or symptoms.
Like many others, my experience with focused ultrasound was nothing less than a blessing. It gave me my life back, and I want patients with essential tremor to have access to the same treatment I did. That’s why I recently flew to Washington, D.C., to meet with lawmakers on Capitol Hill. By speaking with legislators and explaining the value of focused ultrasound technology, I hope to ensure that more people can get the treatment they need.
Effectively treating a disease begins with an accurate diagnosis, but current Medicare reimbursement policy limits patient access to…Read More