After being diagnosed with Parkinson’s disease at 30 years old, Jim McNasby’s symptoms were getting worse, then he tried deep brain stimulation.
“I share my story because it is one of optimism. I had brain surgery and it worked,” said Jim McNasby. Images via Jim McNasby
In 2000, Jim McNasby was putting his Harvard law degree to work in the litigation group of the cigarette and tobacco company Philip Morris.
“This was a pretty high pressure [job] as you can imagine,” McNasby told Healthline.
The demands of the job were so intense that he chalked up cramping in his feet, curling of his toes, and tremors to anxiety.
“But then I spilled a cup of coffee on myself two days in a row at work and that seemed like a problem,” he said.
After visiting the company doctor, McNasby was hopeful that something acute and treatable was going on.
“The doctor was looking for every alternative other than Parkinson’s because it was so unlikely that someone would develop Parkinson’s in their late 20s,” McNasby said. “Michael J. Fox had just come out with the early onset Parkinson’s idea and so it was just coming into the public domain.”
After several months of further testing, McNasby was diagnosed with Parkinson’s disease at 30 years old.
“Parkinson’s usually affects people older than 50. However, it can affect younger people — even children. Between 2 to 10 percent of patients with Parkinson’s are diagnosed before the age of 50,” Dr. Binith Cheeran, medical director of movement disorders at Abbott, told Healthline.
Considering his age and with no family history or knowledge of the disease, the diagnosis came as a shock to McNasby.
“A million things go through your head. Why me? Why now? Surely, there’s a cure,” McNasby said.
After his diagnosis, McNasby began taking pramipexole, and because his tremors worsened, he was also prescribed amantadine.
While tremors are a cardinal feature of Parkinson’s, Dr. Fiona Gupta, assistant professor of Neurology at the Icahn School of Medicine at Mount Sinai, says slowness of movement, stiffness, and gait imbalance are also signs of the disease.
“However, it is crucial to understand that all patients experience symptoms differently. There are no two people that are exactly alike,” Gupta told Healthline.
“There are also a multitude of non-motor symptoms, including mood related symptoms and premotor symptoms that can predate the cardinal symptoms, which include loss of smell,” she said.
Throughout the years, McNasby has tried different medications to help with his symptoms, including Sinemet, which he stayed on for nearly 15 years.
In 2006, he began taking trihexyphenidyl, which he believes helped stabilize his symptoms until recently.
In 2017, his symptoms became progressively worse and he was taking 15 pills a day to help manage them. His condition reached a point that required him to step down from his role as general counsel for Marsh.
“When you take medications to deal with your symptoms, your symptoms get more intense in the beginning and you move out of that into feeling great for a while,” McNasby said.
“I went from tremor to dyskinesia, which means I went from shaking to moving in slower involuntary ways like rocking back and forth instead of shaking. Then that would wear off, and my tremor would come back and I’d go through the shakes again,” he said.
Whenever he took medication, he would go through this cycle.
The constant up and down caused him to look into deep brain stimulation (DBS). He heard about the surgery through the Michael J. Fox Foundation, which he became involved with in 2002 as a pro bono legal resource.
“I mentor about 40 people who are newly diagnosed with Parkinson’s, I speak [at events], and when people call the Fox foundation, they might pass them on to me as a resource,” said McNasby. “I can imagine doing this forever.”
Being involved in the foundation also helps him stay up-to-date on the latest treatments, such as DBS, which according to Cheeran is a well-established treatment for Parkinson’s disease.
During DBS surgery, weak electrical pulses from a pacemaker-like device are delivered by fine wires directly to the affected network in the brain.
“DBS can be a good treatment option for a person who has suffered with typical Parkinson’s disease for at least four years and has experienced fluctuations in the control of symptoms for at least four months, despite adjustment of medication,” said Cheeran.
The way in which Parkinson’s manifested for McNasby made him a perfect candidate. However, before going ahead with the surgery, he spent time discussing different system options with his neurosurgeon, Dr. Brian Kopell.
“The concept of brain surgery was scary to me, so I addressed my fear through education. I spoke to many individuals with Parkinson’s disease, providers, and researchers, and I ultimately held off until my medications were no longer sufficient… Ironically, I used to be concerned about the ‘permanence’ of the DBS procedure, but now that it’s over, I hope that its effects are permanent,” McNasby said.
Kopell suggested that the Abbott’s Infinity DBS System was the best option for McNasby, and on January 10, February 4, and February 11 of 2019, he underwent three surgeries.
While he missed a few months of work to recover fully, he says he immediately noticed improvement.
“I felt a tremendous difference as soon as it was activated. I could sit up straight and felt steadiness in my hands and legs with a lightness in my movements. It was as if someone had lifted the symptoms from my body,” said McNasby.
“I was euphoric and started walking aggressively and even jogging up and down the halls of the neurology department,” he said.
As a part of the initial adjustment process, he took a full dose of Sinemet, but the combination “overstimulated” him, causing dyskinesia.
His doctors concluded that he was sensitive to the combination of the electrical current and medication and made a plan to reintroduce the current gradually.
“About a week after the initial adjustment, I reached a level of stimulation that was like the initial euphoria without any Sinemet at all. I consider that day, March 5, 2019, to be my ‘re-birthday.’ Today, I feel great, and I notice palpable difference in my everyday life,” said McNasby.
“The DBS therapy has given me the ability to feel lighter, move more easily, and be in control. There is a drastic reduction in my tremors and shuffling. My facial expressions have returned, and my posture is better.”
Cheeran says DBS can reduce fluctuations in symptom control and reduce the dependence on complex medication regimes, as was the case with McNasby.
“However, even 25 years after the treatment was discovered, many people with Parkinson’s remain unaware of this option or are not offered the procedure despite many years of suffering fluctuating symptom control,” said Cheeran.
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| “Today, I feel great, and I notice palpable difference in my everyday life. The DBS therapy has given me the ability to feel lighter, move more easily, and be in control,” said McNasby. |
Both Gupta and Cheeran are hopeful that many new therapies for Parkinson’s are underway.
“The investment in research, particularly in the past decade, has increased our understanding of Parkinson’s by leaps and bounds. This gives us great hope for better treatments in the future. That said, for someone with Parkinson’s today, it is vital to get the right treatment at the right time; delaying treatment does not delay the disease,” said Cheeran.
He adds that technological advances arrive faster than pharmacological advances.
“Rapid advances in DBS technology have given doctors even more powerful tools to personalize therapy, and at the same time the technology is robust, low-maintenance, and discreet,” Cheeran noted.
McNasby shares in the message of hope.
“I share my story because it is one of optimism. I had brain surgery and it worked. It was the best medical decision that I have made,” he said. “Anyone with PD should be aware that there are increasing treatment options for PD and that DBS is among them.”
Today, McNasby works at Marsh in a part-time capacity, and continues to volunteer at the Michael J. Fox Foundation.
In his spare time, he spends his time staying active by working with a physical trainer, taking spin and yoga classes, and going on hikes with his husband and dog.
“If you don’t have a plan or something that you want to do, then your ability to do it decreases. I like my work and find great gratification volunteering,” said McNasby. “I also want to be in the best possible health for my family.”
https://www.healthline.com/health-news/this-man-with-parkinsons-experienced-improvement-after-trying-deep-brain-stimulation#A-hopeful-future-for-those-living-with-Parkinson’s
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