SANDPOINT — Setting his hands flat on the table, Robert Cunningham looked down at them and smiled.
They weren’t moving at all.
Just weeks before, this would have been an impossible feat. The symptoms of Parkinson’s disease had consumed his life until a recent surgery turned everything around.
“To sit here, still, is just amazing,” he said, again looking down at his hands.
Deborah Cunningham said it was on March 4 of this year when her husband underwent surgery for deep brain stimulation. On March 15, he had the second part of the surgery. On April 8, barely a month after the initial surgery, Robert went back to work as a project manager for the Idaho Transportation Department.
“This has just changed our lives,” Deborah said. “... For the first time in years his tremors do not control his life.”
The Sagle couple said it all started a little more than five years ago when the symptoms first emerged. Robert said he assumed he had Parkinson’s, but chose to live with it and went on with his life for as long as he could. Nearly three years went by before he was officially diagnosed by a neurologist.
“Things just got worse and worse, and the tremors got worse,” he said. “It was getting hard to eat, hard to sleep, hard to get dressed — you name it. It was awful.”
Not knowing what to do or what could be done, the couple did online research and tried a number of medications. Every medication he used, however, the Parkinson’s would overtake it within weeks, Deborah said. When they found one that worked, they kept increasing the dosage as the Parkinson’s would take over, until he was taking the maximum. One medication worked really well, but the increased dosages started causing him to have vivid dreams, Deborah said, where he would act out whatever he was dreaming about, such as throwing rocks or playing golf.
After reading that the brain quit making dopamine with Parkinson’s, Robert said he got the “bright idea” that he would just work harder. The harder he worked, he said, the worse the symptoms became. Then, last year, he had to have a complete shoulder replacement. While it turned out not to be related to the disease, Parkinson’s didn’t make that surgery any easier. For instance, he had to go to Kootenai Health just to get an MRI, as they had to administer anesthesia so he could go to sleep and be still for the imaging.
DBS changed all that.
“DBS is restoring his life,” Deborah said. “It is not changing his life, it’s restoring it — he is getting back the physical abilities he had before.”
While it is not a cure for Parkinson’s, DBS has been proven — as in Robert’s case — to successfully treat the symptoms.
Robert didn’t have to go far for the surgery, as it was done at Kootenai Health in Coeur d’Alene. The hospital joined the Mayo Clinic Care Network in 2014.
According to mayoclinic.org, DBS involves implanting electrodes in certain areas of the brain through two holes drilled in the top of the skull. The electrodes produce electrical impulses that regulate abnormal impulses, or affect certain cells and chemicals within the brain.
The amount of stimulation in DBS is controlled by a pulse generator, a pacemaker-like device placed in the chest. Lead wires travel under the skin, connecting the device to the electrodes in the brain.
The device can also be removed if a cure is found.
While DBS has been around since 1997, Robert’s unit, the newest version by Boston Scientific, was only approved in the United States in January.
As such, he is the first person in the Northwest with the new unit. Some of the features include a directional lead and a 15-year rechargeable system. The DBS unit can be adjusted with a remote, and the lead wires can be adjusted independently. Robert’s unit has been adjusted twice, Deborah said, and even with his remarkable improvement, it will have further adjustments to fine-tune things.
DBS is also used to treat symptoms of essential tremor, epilepsy, dystonia obsessive-compulsive disorder. There is also research into treatment for tourette syndrome, depression, obesity and Alzheimer’s disease, among others.
Not everyone is a good candidate for DBS, as they have to be in good overall health among other considerations. Robert had to go through three people, including the Coeur d’Alene neurosurgeon, Dr. William Ganz, to ensure he would be a good candidate. The consultations also gave Robert the opportunity to make sure he wanted to go through with the surgery.
Following the initial consultations, Robert was, in fact, having second thoughts. They talked it over as a family and decided the risks were worth it. Now, Deborah said she asks him often if he is happy he did it, to which he replies, “Oh yeah.” Although he said what he had to go through was much more than he bargained for, the results are “great.”
“It was a long process and a lot of time that went by just trying to get to DBS, but it has certainly been worth it,” Robert said. ““The nicest thing is I am back playing the trumpet.”
There were times over the past few years that Robert would tell Deborah he didn’t feel like playing the trumpet, disheartened by the uncontrollable movement of his hands — she would not let him off the hook so easily. So he would pick up his trumpet and end up playing for two or three hours despite the tremors.
“He has a most incredible tone,” Deborah said. “It’s very beautiful, very pure, and I didn’t want him to lose that.”
His family is always there for him, Robert said. His wife kept on him, from encouraging him to play his trumpet, to reminding him to stand up straight as the Parkinson’s caused him to hunch over. Even their two children came from Charlston, S.C., and Dallas, Texas, to be with him through both surgeries.
“The whole family has just been a huge support,” he said.
Mary Malone can be reached by email at firstname.lastname@example.org and follow her on Twitter @MaryDailyBee.