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.
In 1996, during their annual vacation in Hawaii, Jerry and his wife were on their morning run. Taking different courses, Gail had beat him to their agreed upon meeting point and was watching him run. When Jerry reached her, she told him that he no longer swung his left arm when he ran.
"I didn't give it a second thought. I've been running with dogs for years, so I just assumed holding the leash while I ran must have been the reason."
A few months later, though, Jerry was showering for work when he realized he could hardly move his left side at all. As a chiropractor who has treated many people with chronic medical conditions over the years, Jerry knew something was seriously wrong and called a friend who is a neurologist.
The neurologist ran a battery of tests, including a brain and cervical MRI, a lumbar puncture to examine Jerry's cerebral spinal fluid as well as blood and urine tests. The test results were all within normal limits. Unsure what was causing Jerry's symptoms, the neurologist referred him to a movement disorders specialist (MDS) – a neurologist with advanced training in movement disorders.
Following an examination, the MDS diagnosed Jerry, who was just 44, with young-onset Parkinson's disease and prescribed medications.
"The diagnosis of Parkinson's disease was quite a shock for me and my family."
Jerry's symptoms worsened. Rigidity, slowness of movement, mild tremor and speech difficulties resulted in more medications; however Jerry found the side effects intolerable at the higher doses needed to adequately control his symptoms. Two years after his diagnosis, Jerry's symptoms forced him to decrease the intensity of his exercise and stop actively practicing as a chiropractor.
"You have to be very quick and fluid in your movements as a chiropractor. My rigidity made this impossible. Writing also was a challenge and my speech difficulties were beginning to compromise communication with my patients."
Unable to button his shirts, put on his own tie or tie his shoes, yet another medication was added to his daily regimen.
"My compulsion was fishing. I bought 18 fishing rods and a boat and spent most of my time at the lake. It drove Gail crazy."
The medications caused extreme fatigue and nausea, and Jerry often fell asleep during conversations with his wife.
Then, in 2004, Jerry and his wife watched a news program in which a man with PD and severe dyskinesias was able to get up out of a wheelchair and dance once his Activa DBS system turned on.
"It was amazing to see."
Jerry's medications could control his symptoms but only at extremely high doses, which caused intolerable side effects.
"I looked down the road ahead of me and knew that being severely disabled by Parkinson's disease was not the road I wanted to travel."
Jerry received his Activa DBS systems in Sept. 2004 during two separate procedures over an 8-week period. There was absolutely no pain during the procedure, he says, and within a day of each procedure he was walking for exercise.
Jerry's devices were activated two days before Christmas, and the changes were remarkable. "I could tie my shoes and button my shirts again. My facial expressions, which had been gone for about four years, returned. When I returned home from the doctor, my wife and I danced for our daughters for the first time in years. It was a very emotional moment."
Relief from his symptoms also allowed Jerry to keep his promise to a nun at his daughter's school. "I promised her I would play guitar during Christmas mass. And, thanks to Activa DBS, I was able to keep my promise."
While Jerry had almost complete symptom relief on the left side of his body, his right side didn't seem to be holding the settings. Evaluation prompted placement of a new stimulator and revision of electrode placement on the left side of his brain, which controls the right side of his body. This provided optimal symptom control.
Jerry is back to running and biking frequently. He often speaks with others about his experience with Activa DBS and encourages them to consider the treatment sooner, before they have lost too much mobility.