She Lived with These Parkinson’s Symptoms for Over a Decade Before Diagnosis
- Non-motor symptoms like depression and anxiety are often experienced years before a Parkinson’s disease diagnosis.
- 62-year-old Veronica Brown shares her journey with Parkinson’s disease.
- Brown found relief from deep brain stimulation years after taking medication.
For more than a decade, Veronica Brown was experiencing chronic fatigue, depression, and debilitating anxiety without knowing what was causing the symptoms.
“I stopped traveling, and I used to be a travel agent,” she said.
While she didn’t know it at the time, Brown was experiencing non-motor symptoms of Parkinson’s disease during what is called the prodromal or hidden stage of the disease.
Alessandro Di Rocco, MD, a neurologist at Northwell Lenox Hill Hospital, explained that the brain starts to lose specific brain cells that produce dopamine years before motor symptoms like tremors, slowing of movements, and stiffness appear.
“Many people can trace back a few years before they experienced a tremor or motor symptoms and see that they experienced changes in mood, depression, and anxiety. Some people might experience constipation, but it’s so common that it’s hard to connect to Parkinson’s disease,” he told Healthline.
In 2018, while in her late 50s, Brown began experiencing tremors in her foot that forced her to stop working at her retail job. Over the next few years, more physical symptoms developed, including slower walking and a hunched posture.
In 2020, she was diagnosed with Parkinson’s disease.
How she found effective treatment for Parkinson’s symptoms
After processing her diagnosis, Brown began taking the medication carbidopa-levodopa, a dopamine promoter that is commonly prescribed to treat motor symptoms of Parkinson’s disease. Developed in the late 1960s, the medication is known as one of the most significant breakthroughs in medicine.
“It worked until it didn’t,” Brown said. “[It] just seemed like all of a sudden, all the symptoms kept coming. They kept coming faster and faster.”
While the medication made her feel better for a few hours at a time for a while, it eventually brought inconsistent relief. This is common, according to Francisco Ponce, MD, neurosurgeon and chief of stereotactic and functional neurosurgery at The Barrow Neurological Institute.
He said over time, the benefit of medication wears off, and complications from medication can develop, leading to uncontrolled symptoms.
“Due to this, patients often find themselves taking more medication with greater frequency. The degree of control of their Parkinson’s symptoms fluctuates throughout the day, and it can feel like they are on a roller coaster ride,” he told Healthline.
Deep brain stimulation provided relief from Parkinson’s symptoms
After three years of pushing through on medication, in 2024, Brown turned to deep brain stimulation (DBS), which involves brain surgery to implant a battery-operated medical device that releases electrical stimulation to specific areas in the brain that control movement. DBS blocks abnormal nerve signals that cause symptoms of Parkinson’s disease.
“Deep brain stimulation therapy gives patients greater and more predictable control of their symptoms, reducing the fluctuations and dyskinesias. In addition, most patients are able to significantly reduce their medication with DBS,” said Ponce.
Brown was referred to Ponce by her Parkinson’s specialist. At the time, she was taking medications seven to nine times a day. While she had a good history of medication responsiveness, she was experiencing dyskinesias (erratic movements) and disabling fluctuations in her symptoms over the course of the day.
“Despite this, we were able to quantify that Veronica’s symptoms did improve by 50% with medication, which is predictive of a good response to DBS,” said Ponce.
In January 2024, he performed two DBS surgeries on Brown. While DBS has been an FDA-approved therapy for Parkinson’s disease for over 20 years, Brown was one of the first patients in the world to be implanted with the latest innovation in Medtronic neurostimulation technology, Percept RC.
“It’s the smallest and thinnest option available to patients today, which was an especially good fit for Veronica due to her petite stature,” said Ponce.
The procedures were performed while Brown was asleep, which helped her overcome some anxiety. The first time they turned on her DBS was January 30.
After surgery, Brown experienced more steady control of her symptoms with fewer fluctuations, as well as a reduction in her medication requirements and dyskinesias.
“I was very fortunate, and it worked on me. I woke up one morning and came downstairs and said, ‘I’m going to bake some cookies,’” she said. “Everybody just kind of looked at me like, what is she doing?”
It had been years since her family had seen her show such excitement and energy.
Only 4% of Parkinson’s patients who are eligible for DBS receive it
Although DBS is FDA approved and studies show its efficacy for Parkinson’s disease, because it’s a brain surgery, people are hesitant to embrace it.
“Our goal is, through outreach and education, to help increase the awareness that this is a data-proven therapy that significantly improves quality of life in patients with Parkinson’s disease,” said Ponce.
He hopes that more people will consider it because DBS surgeries are now more comfortable and less stressful than in previous years.
“It’s hard to imagine undergoing major surgery while awake, but this is often the norm for patients who need brain surgery,” Ponce said. “Today, we know it’s safe and effective to perform DBS procedures while patients are awake or asleep under general anesthesia, which can help ease the apprehension that many have about the surgery.”
Di Rocco added that other reasons that contribute to only 4% of eligible patients having the procedure done include age, having other medical conditions that put them at high risk for surgery, and cognitive changes.
“Oftentimes, you want to use this procedure on people to resettle their motor function, but they often have also developed cognitive or intellectual problems, which makes this non-indicated,” said Di Rocco.
Additionally, not all neurosurgeons are trained or have the support to perform DBS surgery.
Brown is grateful she qualified for and had access to DBS surgery.
“I’ve only got one tiny little scar; it’s maybe an inch long,” she said.
The advocacy of her husband and support from others living with Parkinson’s disease helped her through the process and continues to help her today.
“[If] you can find a good support group of people who’ve been through it, it’s very helpful…everybody has something different to contribute,” said Brown. “And it could be just one lady who already had Parkinson’s [sharing] how she dealt with it.”
In fact, it was a woman Brown met in a support group who told her about her personal experience with DBS.
“She told me about, you know, what to expect,” she said. “All the different people that I’ve met through Parkinson’s, everybody has something different to contribute.”
To find a support group near you, visit the Parkinson’s Foundation or the Michael J. Fox Foundation.
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