The following story recounts the experiences of one person using Activa® DBS to suppress movement-related symptoms of Parkinson's disease (PD). Medtronic invited him to share his story candidly. As you read this story, please bear in mind that the experiences are specific to this particular patient. Results vary; not every response is the same.
Clare is an avid golfer, a poker player, a woodworker, and best friend and companion to Fred, a friendly basset hound/spaniel. She manages a popular restaurant in a Minneapolis suburb—a job that requires a lot of endurance and hard work. When she was about 37, though, she began to notice her energy levels dropping. She developed tremors on her left side.
"I didn't pay much attention to it," Clare recalled. "I just thought I'd worked too many hours and didn't get enough sleep. I drank too much coffee, so I figured it was fatigue."
But about two years later things hadn't improved. In fact, a doctor urged Clare to see a neurologist about the severe tremor in her left hand. That neurologist told her something that surprised her and changed her life forever: Clare had Parkinson's disease (PD).
A pragmatic, down-to-earth person, she at first thought it wasn't that big a deal. "It didn't seem to be controlling me in any way. And I try to keep a positive outlook on everything. I thought maybe I'd have a good excuse to be a bad putter. But the further I got into it, the worse it got, the more debilitating it became."
The first medications Clare took produced unpleasant side effects, such as dizziness, drowsiness, and nausea. But fortunately Sinemet® helped her symptoms without side effects. Nonetheless, the disease progressed over the course of several years. The tremors increased. Her balance got worse. She would have tics. She would freeze up and not be able to move for minutes. Because of stuttering, a two-minute conversation could take ten. Her fatigue increased.
At a certain point Clare had to stop working in front at the restaurant, greeting and seating guests. Even helping out in the kitchen became impractical, because she was unsteady on her feet. She sometimes dropped pizzas. She even fell against the pizza oven several times, burning herself. Her tics could cause her to kick or elbow someone unlucky enough to be close by.
PD affected her personal life, as well. It limited and then foreclosed on her golf. She couldn't go out with friends like she used to—because most of her time went into work, and recovering from work at home. She couldn't play with Fred as much or take him on very many walks.
"I was kind of bummed out," said Clare. "I don't know that I ever got into a depression. But it was more the realization that unless something happened drastically, the world as I knew it was over. I would have to stop working. How was I going to earn a living? It was kind of scary."
Though things were looking grim to Clare, her neurologist reminded her about another treatment option—Activa Deep Brain Stimulation. She went to a class on DBS and researched the therapy online.
"I learned about the risks [of the procedure] and what could happen," she said. "There can be complications. I could have a stroke. Maybe it wouldn't work at all. But I decided that the possible outcomes were worth it. Then it was a no-brainer, basically. I just had to do it."
Clare's Activa DBS lead-implant procedure took about seven hours. She was conscious for some parts of it, and sedated for others. A couple of weeks later she had her Activa DBS System completed, with the implant of two neurostimulators up near her collarbone.
Clare has had three programming sessions since then, to get her Activa System working to best effect. And how has her life changed in the months since the procedures?
"Oh, man," she said, "it's like I can walk. I'm standing straight. I used to be stooped over and had a limp. Don't have any of that now. I can work. I have energy to do things. I've played more golf in the last six weeks than I have in the last five years. I feel so much better. I'm smiling all the time. It's just a miracle.
"I'm able to work out front now [at the restaurant]. I'm having a good time with the employees. And they're not having to cover for me. My energy level at work is better throughout the entire shift, versus working four or five hours and then crashing for a while. I haven't dropped a pizza in a while. Haven't burned myself in a long time, either. That's kind of nice."
Clare is also getting together with friends more and is back to playing poker. She drove home to South Dakota three times within a few weeks. She sat through two and a half hours of a young relative's dance recital without squirming—a pretty big accomplishment for her. And, of course, Fred gets a lot more walks and playtime.
"I wasn't asking for much," Clare said. "I just wanted to be able to go to work and hang out with friends. And that's what I got! But I got more. I haven't felt this good in ten years. People I haven't seen in two or three years just can't believe the change.
"When my brother first saw me walk into a room a few months after my procedure, his jaw dropped to his chest. It was pretty cool."