- Chuck’s Parkinson’s disease symptoms – including tremors and rigidity – disrupted his personal and professional life.
- Although Chuck was excited to take part in a focused ultrasound clinical trial, his wife Maureen, a physician, was hesitant.
- Now, three months after the procedure, Chuck has resumed his work and hobbies and is preparing for his second focused ultrasound treatment.
Chuck Walker and his wife Maureen Whelihan, MD, are avid adventure seekers, and exercise is part of their daily lives. They enjoy hiking, running, boating, riding motorcycles, and simply being outdoors.
But while on a routine run in 2013, Chuck noted a problem with his gait – he was landing flatfooted on his right side. The symptoms steadily progressed to more obvious right-sided rigidity and tremors. He saw a neurologist at the urging of his partner Maureen, who is an obstetrician-gynecologist.
“The doctor diagnosed me with Parkinson’s disease right away,” Chuck recalled. “That was pretty devastating.”
His symptoms impeded many of the hobbies that he and Maureen enjoyed.
“When I would ride behind him on my motorcycle, I noticed that his brake light would flicker constantly,” she said. “I assumed it was a faulty bulb until I realized that the hand that was most affected by the tremors also controlled the brake. It was his tremors lightly hitting the brake, and soon it became dangerous for him to ride.”
Beyond his hobbies, the Parkinson’s symptoms also began to hinder his professional life.
“I own my own indoor air quality business and was often on the speaker circuit, but I became uncomfortable with the travel and public speaking,” Chuck said. “The added nerves made my tremors worse, and I didn’t want the shaking to detract from my message on stage.”
Following his diagnosis, Chuck’s doctor prescribed medications to control the disease. After much trial and error with various drugs, he found a regimen that worked but didn’t like how the medications made him feel. He was also hesitant about surgical interventions.
“I didn’t want deep brain stimulation,” recalled Chuck. “I didn’t want the wires, and the surgery, and the battery pack.”
In 2018, Chuck attended a Parkinson’s disease symposium in South Florida and learned about focused ultrasound. He immediately told Maureen about the new treatment.
“I was actually quite familiar with focused ultrasound because it has been used to treat uterine fibroids for some time, but I wasn’t aware that it was being used in the brain,” she said.
That’s when Maureen reached out to a colleague of more than 15 years, who is also the Foundation’s Director of Clinical Relationships, Suzanne LeBlang, MD.
“Susie met us for dinner and told us about the clinical trials for Parkinson’s,” Chuck recalled. “Unfortunately, when I brought it up to my neurologist, he wasn’t initially receptive to the idea because he was an expert in deep brain stimulation.”
Maureen was also wholeheartedly against the idea of a phase II safety trial.
“As a medical professional, I know enough about the anatomy of the brain that I was uncomfortable with the idea of my loved one taking part in a neurological clinical trial,” she said. “I didn’t doubt the technology, because I knew the level of precision that focused ultrasound is capable of – but I didn’t want to have it tested on Chuck. I honestly thought his disease had not progressed enough to try experimental procedures. I really put the doctors though the ringer asking questions and making sure that Chuck knew the pros and cons.”
However, Chuck was not taking no for an answer.
“As soon as I learned about the trial, I knew I would participate if I was a good candidate,” he said. “I was going to have this procedure. And once we decided to go for it, Maureen and I approached the physician as a patient-doctor team.”
Ultimately, the neurologist referred Chuck to a neurosurgeon who was treating patients as part of a Parkinson’s disease clinical trial using focused ultrasound to target a system of nerve fibers in the middle of the brain called the pallidothalamic tract. He scheduled treatment for July 2022. On the morning of treatment, Chuck remembers that the most daunting part was when doctors placed the stereotactic frame on his head to ensure it remained still during treatment.
“I was ready; I wasn’t nervous,” he recalled. “In all, they did six sonications on the side of my brain that affects the right side of my body. The first three sonications were low power to make sure they were targeting the right place, and then they started treating with higher power. By the fourth sonication, my tremor was gone, but they really wanted to relieve my rigidity. After six sonications, the doctors were confident they had achieved their goal.”
He returned home later that day, and Maureen remained vigilant for any side effects.
“Those first few days, I was watching very closely for any complications,” she said. “The only thing I noticed was that he began to say aloud anything he was reading or writing. I thought that was odd, but it was all coherent; nothing was jumbled. Ultimately, that symptom was transient and resolved quickly.”
Thankfully, Maureen also noticed positive effects from the focused ultrasound.
“After a few days, he was cleared for light exercise, and we went for a walk. I noticed immediately that his right arm was swinging like normal without any effort. After a week, his shoulders relaxed, and he was standing up straighter.”
It has now been nearly three months since his treatment. Chuck has started running again, gotten back in the gym, and is comfortable making presentations at work.
He is also looking forward to another treatment. The clinical trial that Chuck took part in is a bilateral trial, meaning patients have the option to have the other side of their brain treated later. He is planning to schedule the second focused ultrasound procedure for later this year.
“Focused ultrasound has really changed my life,” he said. “Maureen and I are thrilled that the Foundation is dedicated to advancing this research, and we are true advocates for this technology. We would be happy to talk with any patients considering the treatment or physicians who remain skeptical about its benefits.”
*There are a number of different targets in the brain that are being investigated for focused ultrasound treatment of Parkinson’s disease. Two of these targets – the ventral intermediate (VIM) nucleus of the thalamus and the globus pallidus – have been tested in clinical trials and are FDA approved for tremor-dominant Parkinson’s disease and the dyskinesia or motor symptoms of Parkinson’s disease, respectively. A third target, the pallidothalamic tract, is being investigated in the clinical trial in which Chuck participated. It is also important to note that there is no cure for Parkinson’s disease; focused ultrasound treatment aims only to alleviate its symptoms.