"That feels good."
With that seemingly simple affirmation, immediately following the seemingly simple activation of the Infinity Deep Brain Stimulation System (DBS), Jim McNasby felt the tremors – that had steadily worsened in the 19 years since he was diagnosed with Parkinson's disease – diminish.
Within 15 minutes, the attorney, who would lose his balance standing still on the street and felt nervous walking to his New York City office, was "running down the hall."
He was certainly not cured - there is no cure for Parkinson's, a degenerative neurological disorder - but he was on a path back to a world he sorely missed. "It's such a relief. When you have Parkinson's, the mundane becomes complicated and when I got Abbott's Infinity DBS, the mundane returned to mundane."
Jim's story is one of science and love and how a life can be transformed with a well-timed phone call from Massachusetts and some well-placed electrodes in the brain.
When Spilling Coffee is More than Spilling Coffee
Jim McNasby's life at 30 was something from the finale of a happy-ending comedy or the opening scene of a story that was going to get much worse before it could get better. He was a Harvard Law graduate, employed by the world's leading insurance broker and risk advisor, doing work that would eventually lead him to hold the title of General Counsel for 10 years.
He was traveling frequently and living in various locations around the world, when one day he spilled coffee on his shirt. The cup seemed to jerk in his hand. It was strange, but not a big deal. Until the next day when it happened again.
In retrospect, he realized that he had experienced other symptoms, like slight tremors, going back a couple of years but knew nothing about Parkinson's and hadn't thought too much of it. But this was different. He went to the doctor and was diagnosed in October 2000. He began taking medication in 2001 which kept things somewhat under control.
For a time.
Trending Over Time
Parkinson's, like many other conditions, has both a short- and long-term component. Individual days can be better than others, but over time, the condition will tend to trend downward, especially if the medication used to treat it loses some effectiveness over time (McNasby was taking 27 pills per day by the time he had his DBS activated).
As symptoms worsened over time, McNasby came to understand that one of the most powerful tools in his fight against the disease was his openness and sense of humor. "At first, I tried to hide the tremors because, especially in professional settings, you don't want that to be the focus of a meeting. But I soon came to realize that when I said I had Parkinson's, it allowed people to get past it quicker and created a better atmosphere."
Chopsticks and a Lazy Susan
"One time I had to fly to Taiwan for work. Long flights play havoc with the condition, as do interruptions in sleep patterns, medications and other things. By the time I arrived at the office, I was in pretty bad shape. Lunch was being served. With food situated on a Lazy Susan in the middle of a table and chopsticks as the only utensils, this was a nightmare for someone with Parkinson's, especially given that tremors were worse the further my arms extended from my body.
"I decided to just say I had Parkinson's upfront and the anxiety dissipated. One person quietly brought me utensils, another brought the food closer and what could've been an uncomfortable situation ended up leading to a really friendly, nice tone for the rest of our time together."
Mr. Tambourine Man
McNasby also found that the more he could make people laugh, the easier it was to talk about, and deal with, the condition. "I was speaking to a conference of attorneys when I fell from my chair. But when I got up, looked at the chair as if it was responsible and asked, 'Is there a lawyer in the house?' it made everyone laugh and much more comfortable."
And McNasby is all about increasing the comfort level during tough times. "I was talking to a man who'd just been diagnosed and he was, of course, nervous about the impact it would have on his life. We were talking about the adjustments that people have to make, and I told him, 'I can't write very well but I play a mean tambourine.' That's kind of my motto: Relax. Live in the moment. Play the tambourine."
Combination of Man and Machine
McNasby appears to give equal credit for his ability to enjoy his current life to the Infinity DBS and his husband, Donny Moss. Donny, who produces animal rights videos and runs associated campaigns, began dating McNasby in 2004, well after he had been diagnosed. "You don't make a conscious decision to bond or not with a person who has Parkinson's. We were just going on dates at first and then we were partners."
Moss, however, had no illusions about the disease. "I grew up in Miami Beach surrounded by an older population that included a lot of Parkinson's patients. I was very familiar with it. At the time, Jim's symptoms weren't as bad as people who contract it when they are older, but they did get a lot worse."
Unlike when the Infinity DBS was turned on with its immediate favorable impact, the progression of the Parkinson's was an evolution. "It started with Jim asking me to crack his back or extend his leg and over time, the need for help increased. It was difficult for him to do a lot of things he'd done before, like type or even go for a walk."
McNasby remembered how his husband helped care for him in a thousand small, wordless ways. "I got up earlier for my workday than Donny did for his, but when I was putting my shirt on, he was always standing there, ready to button the buttons, put on the cufflinks and tie my tie."
A Call from Massachusetts
As McNasby's symptoms progressed, Moss was increasingly involved in his care and treatment, even traveling to Boston to join a focus group made up of people caring for Parkinson's patients. Sponsored by a company that developed pharmaceuticals to treat the disease, discussions focused on needs, treatments and more. And the people who provided support and care had a lot to talk about.
"We had talked with my doctor about DBS years earlier," McNasby recalled. "But our feeling at that time was that it was brain surgery, which was scary to me and the medicine was working okay…until it wasn't. But in the intervening years, my symptoms had gotten worse.
"Donny called me after the focus group and said, 'Everyone here was asking me why you hadn't looked into DBS, because of your circumstances,'" McNasby said. "He knew that I'd thought about it a while back but I was on the 'not for me' track. But this call was different. I thought, 'I guess I should.'"
Hitting the Switch
"It was like a switch went off in his head," said Moss, foreshadowing the activation of the Infinity DBS. "He was going to get it. The decision was made right then."
As president of the Parkinson's Unity Walk, McNasby had an extensive network, called the executive director and told her he wanted DBS. She gave him the name of her doctor, who did a full assessment, and about three months after the Massachusetts call, he had the first of the three required procedures. After a four-week recovery, he went to the office to have the Infinity DBS activated.
Fifteen minutes later he was doing that hallway run.
What Happens After Infinity?
In McNasby's case, post-activation was wonderfully anti-climactic. Prior to the DBS, he had volunteered one day a week at the Michael J. Fox Foundation for Parkinson's Research. In March, 2020 he took on the full-time responsibilities of General Counsel and Chief People Officer there, the only full-time employee with the condition. "I represent the community," he laughs. On his first day at the office, it was closed due to COVID-19.
He has been through too much to let something like that get to him. He is grateful for all the days post-Infinity.
"Things returned to a kind of normal. I can use the cash machine and it doesn't take several minutes of feeling nervous and self-conscious. I used to be worried about everything, all day. I had to plan everything out and anticipate what might go wrong and how I'd adjust to it.
"It's freed up my mind, as well as my body. I don't have to waste brain power on routine things. I can spend it on accomplishing more, focusing on everything - and everyone - I want to focus on."
Not surprisingly, that everyone includes his husband. "When you get Parkinson's your entire support system gets it too," said McNasby. The couple has clearly felt each other's pain and relief.
"Even at his worst, Jim's Parkinson's has never stopped him from living," said Moss. "But it did compromise his quality of life. He did the things he liked but it could be so difficult and limiting. It wasn't until after the DBS that I realized how many of my decisions were impacted by how they could affect Jim. I can be away from home now, visiting my parents for a week and not worry if he will be ok."
The Infinity DBS has alleviated many of Jim McNasby's physical limitations. In doing so, it has increased the physical and emotional freedom for both he and his husband. If you asked Donny Moss how that feels, he'd probably say:
"That feels good."
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KEYWORDS: NYSE:ABT, Abbott, deep brain, Infinity DBS, beep brain stimulation