"To me, an important point about DBS is that, once you define your good settings, it's predictable."
This story recounts the experience of one individual who is receiving Medtronic DBS Therapy. Please bear in mind that the experiences are specific to this particular person.
It took a long time for physicians to conclude that Davis Phinney, founder of the non-profit Davis Phinney Foundation for Parkinson's, was suffering from Parkinson's disease. That's because he was a world class cyclist whose career included an Olympic Bronze Medal, stage wins in the Tour de France, and hundreds of other race victories. When he experienced extreme fatigue, muscle cramping, and a shuffling gait, no one suspected Parkinson's disease.
Learning to live with PD
At age 40, ten years after he began seeking an answer for his puzzling symptoms, Davis was diagnosed with young-onset Parkinson's disease. At first, he managed with a positive outlook, therapies, and – of course – exercise. In time, he also added Parkinson's medications.
Within a few years his symptoms became increasingly difficult to manage. "I had to anticipate and plan everything," he said. "There were many times when I mistimed my meds, and I would be sitting there with my hand jammed under my leg to keep myself from tremoring."
Dealing with the side effects of medications
His symptoms began to wear on him. He lost the ability to change his facial expressions. He wasn't sleeping. Eating and dressing became chores. He lost weight, and biking – his passion – became something he could only remember fondly.
The combination of sleep deprivation, dependence on medications, and dyskinesias led him to consider Medtronic Deep Brain Stimulation Therapy. The process included much research and thinking, including consulting with several physicians and talking to a friend with a DBS system.
DBS Therapy requires brain surgery. Risks of brain surgery may include serious complications such as coma, bleeding inside the brain, seizures and infection. 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. Occurence of "fall" has also been reported in patients with Parkinson's disease.
Planning for the DBS Therapy System implant
Anticipating the benefits of DBS Therapy
Implanting the DBS Therapy System
In looking back at the procedure, Davis noted that there was some discomfort involved – most notable pain at the site of the incision where the leads were implanted and in the chest where the neurostimulator device was placed.
Programming the DBS Therapy System
The DBS procedure was "so worth it," he said. "It was one of the most amazing occurrences in my life. The gift is just the absolute joy you get out of being able to do the simplest things in life again – writing, eating, smiling, laughing, conversations, being out in public. It is a gift that is almost beyond measure."
Davis Phinney's experience with Parkinson's disease and his specific treatment plan have enabled him to build a new life for himself – a life celebrating daily victories.
Celebrating daily victories: post-implant
One year after the implant
Medtronic invited this patient to share his story candidly. 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.