The other day, Melanie Carlson took her five-year-old daughter shopping for a bathing suit.
Since they couldn’t find a suit in the first store, they stopped by a second.
Then, Carlson drove them to a third store, acutely aware the whole time that this mundane afternoon would have been nearly impossible for her to experience less than a year earlier.
“All the little things,” she said, “I’m just very thankful for.”
The 41-year-old who lives in Northeast Washington DC in the United States, has Parkinson’s disease – a neurodegenerative disorder that causes shaking, stiffness and difficulty with balance and coordination.
Until recently, the medication Carlson took to manage the disorder caused dyskinesia – involuntary muscle jerks and spasms that made it hard for her to walk, let alone drive.
Leaving her house was exhausting, both physically and emotionally, and she was terrified her symptoms would make her drop her young daughter.
But in June (2022), Carlson became one of the first Parkinson’s patients to undergo a minimally-invasive procedure at the University of Maryland Medical Center that uses focused ultrasound to relieve the disease’s symptoms and the side effects of the medicine used to treat it.
The procedure, approved by the US Food and Drug Administration (FDA) in 2021 to treat advanced Parkinson’s on one side of the brain, was recently tested in a clinical trial led by researchers at the university’s School of Medicine.
The results, according to an international multicentre study published late February (2023) in the New England Journal of Medicine, were promising.
Nearly 70% of patients who received the treatment showed improvements in symptoms, compared to 32% of patients in the control group, who received a sham procedure.
Those in the treatment group, i.e. 69 of the total 94 participants, often experienced immediate relief from severe symptoms, such as tremors and rigidity in the arms and legs, and from dyskinesia.
Two-thirds of the patients who responded to the treatment continued to benefit from it a year later, according to the study.
Participants will be followed by the researchers for five years to determine how long the benefits last and how it affects the progression of their disease.
Like other treatments for Parkinson’s, the focused ultrasound procedure doesn’t cure the disease, said University of Maryland neurosurgeon Professor Dr Howard Eisenberg.
Instead, he said, the procedure gives patients relief from symptoms that are making their lives difficult.
And it does so without anaesthesia, incisions or an in-patient hospital stay, differentiating it from deep brain stimulation, another treatment for Parkinson’s in which electrodes are surgically implanted in a patient’s brain.
During the focused ultrasound procedure, patients remain fully alert as they lie in a magnetic resonance imaging (MRI) scanner.
Doctors then direct ultrasonic energy through a targeted pinpoint in the skull to the globus pallidus – a structure deep inside the brain that helps control voluntary movement.
Patients talk to the doctors throughout the treatment, allowing the medical team to monitor the effects of the procedure and make adjustments as needed.
And since the procedure takes place in an MRI scanner, doctors can watch the treatment progress in real time on a temperature map, helping them precisely target the correct area and apply the right amount of heat to treat it.
Prof Eisenberg compared the procedure to using a magnifying glass to direct sunlight onto a leaf or piece of paper, burning a tiny hole into the object’s surface.
But instead of burning a leaf, the ultrasound device knocks out a small cluster of neurons that are involved in a faulty circuit in the patient’s brain, he explained.
Doing so can help alleviate the symptoms a patient is experiencing.
It’s a “Back to the Future”-type approach, he said, that takes a similar strategy used decades ago to treat Parkinson’s, and makes it much safer and less invasive.
Carlson first heard about the procedure during a “desperate night” last March (2022), as she scoured online research articles about treatments for Parkinson’s.
“I want to do it tomorrow,” she remembered thinking.
When she got cleared for the procedure, she said, it felt like winning the lottery.
Though Prof Eisenberg and his colleagues are currently conducting a clinical trial to see whether the procedure can be used on both sides of a patient’s brain – thus, alleviating symptoms on both halves of their body – for now, the treatment is only available for one side of a patient’s brain.
Since most of Carlson’s symptoms were on the right side of her body, the left half of her brain was treated with the procedure.
She noticed a difference immediately after the treatment.
“It’s like night and day,” she said. “I can walk. It’s just so mind-boggling.”
But Carlson, who didn’t participate in the recent clinical trial, had to pay for the procedure out-of-pocket, since it’s not yet covered by insurance.
The cost for the procedure at the University of Maryland Medical Center ranges from US$28,000 (RM126,714) to US$30,000 (RM135,765) for patients like Carlson who self-pay, according to a spokeswoman for the medical centre.
Carlson said her parents sold a car so she could get the treatment.
By sharing her story, she hopes to provide solace to others with Parkinson’s who are struggling with the disorder’s symptoms, and further galvanise the medical community to expand access to the treatment.
“The science is there, the impact is there,” she said, “and I’m just hoping that this is accessible to everyone who needs it.” – By Angela Roberts/The Baltimore Sun/Tribune News Service