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Rick’s Story

This story recounts the experience of one individual who is receiving Medtronic Deep Brain Stimulation Therapy to reduce symptoms of Parkinson’s disease. Please bear in mind that the experiences are specific to this particular person.

While some people might be clueless if their neurosurgeon started talking about tripolar configurations and amps, Rick D. can not only follow along, but jump into the conversation. As a biomechanical engineer who used to develop heart pumps, Rick is very comfortable in the world of implantable devices.

So when his doctor recommended Medtronic DBS Therapy for his increasingly debilitating Parkinson’s symptoms, Rick was open to the idea — but not without hesitation.

"I had never heard of DBS, but I learned real fast," Rick said. "I wanted to make sure it was safe, since it was a fairly new therapy at the time I was considering it. I checked the Food and Drug Administration database that lists adverse events involving medical devices, and the only DBS failures I found were related to the lead wires, not the device itself," he said. "I felt that the risk of infection or some bleeding from the leads was minimal compared to the benefit of getting my life back."

Living with Parkinson’s Disease

Rick’s symptoms had gotten worse in the 5 years since he was diagnosed. "My left hand was shaking a lot, and I was having trouble walking," he said. "I did what I call ‘furniture walking’ — I’d grab furniture to steady myself as I crossed a room."

Rick tried many medications, but nothing seemed to work as his symptoms progressed. "I’d ramp up the dosage of a medicine until I experienced the side effects, and then I’d switch to a different medication," he said. "I was taking medication every 3 hours, but was only ‘on’ without symptoms for half an hour during that time. I knew I needed something beyond medication."

When it came time for surgery, Rick admits he was a little nervous. "It’s kind of freaky that you’re awake during surgery," he said, "but as an engineer, I was intrigued by the whole process. I woke up with this big halo on my head and didn’t have any pain, which they tell me is rare. Most people feel some discomfort. The only surprise was that my face then swelled up. My forehead was puffy and my eyes were closed, but the swelling only lasted 2 days," he said.

Within a week, Rick was home. "I remember sitting on my patio, with tears streaming down my face. My mom, who was visiting, asked me what was wrong. I said it was nice to just sit and finally feel relaxed," he said.

Risks of the Procedure and Stimulation

Implanting DBS Therapy carries the same risks associated with any other brain surgery. This may include serious complications such as coma, bleeding inside the brain, seizures and paralysis. Some of these may be fatal. Once implanted, the system may become infected, parts may wear through your skin, and the lead or lead/extension connector may move. Medtronic DBS Therapy could stop suddenly because of mechanical or electrical problems. Any of these situations may require additional surgery or cause your symptoms to return.

Medtronic DBS Therapy may cause worsening of some motor symptoms associated with your movement disorder, and may cause speech and language impairments. Stimulation parameters may be adjusted to minimize side effects and attain maximum symptom control. In patients receiving Medtronic DBS Therapy, depression, suicidal thoughts, and suicide have been reported. Occurrence of "fall" has also been reported in patients with Parkinson’s disease.

Advice: Be a Squeaky Wheel

Rick’s advice to those who’ve just been implanted with a DBS system is to be a "squeaky wheel." "There’s a period of adjustment where you and your programming team have to find the stimulation settings that work best for you," he explained. "It’s not an easy process. It took 12 weeks of trial and error before we found the right settings for me. It turned out I needed my stimulation turned up very high, which is unusual."

Rick credits his persistence with finally getting to a comfortable stimulation level. "You have to make noise if you’re not happy with your settings," he said. “Doctors will assume no news is good news." Added Rick’s wife, Carol: "Develop a relationship with your programmer, and get their direct phone number. We have Rick’s programmer on speed dial," she joked.

Rick’s other advice is to develop a network of peers. "While you need to be in constant communication with your healthcare team, it’s also good to have a support network of people who’ve been through it," he said. "They may be able to offer suggestions, and then you can take those to your doctor."

Rick is active with several support networks. He serves as a Medtronic DBS volunteer who shares his experiences with people who are considering DBS Therapy and those who are already receiving it. He also regularly meets with new and prospective DBS patients through the Muhammad Ali Parkinson Center near his home in Phoenix, Arizona, and moderates an online discussion group.

Complications Worth the Benefit

Rick is straightforward in telling people that the DBS Therapy journey is not always smooth. Within 1 week of his initial implant, he noticed a small bump near his head incision. It turned out to be an infection near the lead, and the lead had to be replaced. Nine years later, Rick noticed some skin erosion in the tissue near his collarbone, where the battery was implanted, so his doctor moved the battery to his abdomen. Then he developed another lead infection and had it replaced.

But, some extra surgeries Rick welcomed, like when a rechargeable Medtronic DBS system became available. “I jumped at the chance to get that,” Rick said. “Since my stimulation level is high, I was churning through batteries. I’d need a new neurostimulator every 14 months. Now I just recharge my battery every other day for an hour."

Rick considers the complications just minor setbacks. "While no one wants another surgery, DBS Therapy is giving me the luxury of enjoying my life and enjoying being with my 4-year-old son, so it’s worth an occasional inconvenience," he said. "I’d do it again in a heartbeat."

Not everyone who receives Medtronic DBS Therapy will receive the same results as the individual in this story; some people may experience significant symptom relief from DBS Therapy, and others may experience minimal symptom relief. Talk to your doctor to determine if Medtronic DBS Therapy is right for you.

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