Diane Kicza is a former banker and university fiscal manager in Washington State who recently retired to stay home and be a full-time caregiver to her husband. They have two grown children, in New York and Oregon. Diane can be contacted at firstname.lastname@example.org and would be happy to discuss her experiences of being a Parkinson's spouse.
My husband John was diagnosed with Parkinson’s disease in 1997, the summer he turned 50. He had gone to the doctor because of a slight tremor in his right hand. In retrospect, we know of other “early-warning” signals that were present, such as small, cramped writing and his diminished sense of smell. We just didn’t know at the time that those were two common symptoms of Parkinson’s. The neurologist he saw next told him, “Yes, you have Parkinson’s”, but then added “But don’t worry, you have the slowly-progressing kind and won’t notice any more symptoms until you’re in your 70s.” Boy, was he wrong!
John’s tremors became more pronounced over the next couple of years and in early 2002, John had his first episode of dyskinesia. I usually describe it to people as a rapid misfiring of his nerves, and in John’s case, it caused very violent shaking and misfiring. We could watch the clock and after exactly four hours, it would subside. Initially, it only happened every couple of months. Then it increased to once a week, then once a day, then sometimes a couple of times a day. As his wife, it was alarming to watch and know there was nothing I could do to make it stop.
Since the time of his diagnosis, John read everything he could about Parkinson’s. He wanted to manage it in the best way possible. He started reading about a new treatment at the time, deep brain stimulation (DBS). He told me right away that he hoped when the time came, that DBS would help him. After the frequency of his dyskinesia attacks increased, our family doctor told us it was time for DBS.
We live in a university town in rural eastern Washington where John was a professor of history. Our doctor wanted to send us to OHSU in Portland, Oregon, to consult about DBS. He told us OHSU is the best place in the country doing this relatively new surgery, and if it were him, that’s where he would go. So in 2003 we packed up and drove 350 miles to Portland. Now, of course, it is successfully done all over the country and the world.
At OHSU, we saw Dr. Nutt, who runs the Parkinson’s Center of Oregon, an NPF Center of Excellence. He immediately agreed John was an excellent candidate for DBS surgery and sent us down the hall to talk to the surgeon. The procedure was scheduled for six weeks away, so we went home and started making plans. John seemed truly excited to try this and I wanted it for him. There was never a moment of fear or second-guessing, even as they explained how eight electrodes would be implanted in John’s brain while he was awake, and connected to a generator in his chest. At this point in John’s life, when he wasn’t dyskinetic, his tremors were only on the right side of his body. The surgeon planned to do the implants on the left side of John’s brain, to control his right side. (Now, I’m told, DBS electrodes are implanted on both sides at the beginning as they now know that even if the patient doesn’t need them on both sides right away, eventually, they will.)
On the day of the surgery, they took John to pre-op and fitted him with a halo device. Our son, daughter and I were allowed to be with him for this. Every member of the team efficiently did their role. Soon John was wheeled off to the operating room. As they fitted a white drape over his halo and face, John told the surgeon, “Now I know what a Rice Krispy feels like in the box!” His sense of humor was intact!
The next time I saw John, he was in the recovery room. The doctors had done some preliminary programming on his new DBS before they invited us to see him. Despite being a little groggy, John looked at me and smiled. As I looked at him, laying ever so still and not shaking for the first time in six years, my eyes welled up with tears—tears of happiness. We both knew this was absolutely the right decision for all of us.
The permanent generator was implanted in his upper chest about a week later. It was a same-day procedure and went very smoothly. Over the next few days, the doctors fine-tuned his settings at their clinic. The recovery was very routine. John did not have a lot of discomfort and I had to keep telling myself that this miracle of him being tremor-free was not a dream.
John was the happiest I’d seen him in a long time. He returned to the university about four weeks later. He was never a complainer about his Parkinson’s (and still isn’t) but I knew what a toll it was taking on him. For John, his generator had to be set very high to control his tremors. This necessitated replacing the battery more frequently—every 12 months instead of every 3-5 years. It was worth it.
In January, 2009, it was time to do the left side of his body. Neither of us had any doubts about going through the DBS procedure once again. In fact, we felt like pros at it by then. John retired from teaching at that time. His tremors were well controlled, but sadly, the other symptoms of Parkinson’s were taking hold.
“We’re a team” is what we’ve often said to each other throughout our 33 years of marriage in dealing with all of life’s ups and downs. Parkinson’s was not going to change that. It has robbed John of his career, being able to speak, travelling, and makes many things much more difficult for him to do. But we’re still a team.