Right now, I’m sitting in a hospital waiting room as my husband has brain surgery. The road here wasn’t short. When he was diagnosed with Parkinson’s 13 years ago, we investigated treatments but found that there weren’t many options. The gold standard for Parkinson’s Disease is a drug called carbidopa/levodopa that Oskar has been taking for a number of years. As I’ve written before, it’s not a predictable treatment—sometimes it works, sometimes it doesn’t. Moreover, the longer one takes carbidopa/levodopa, the more likely one is to experience dyskinesia: Unintended movements caused by a surplus of dopamine in the system. These can be annoying (like when Oskar dropped my favorite mug) or potentially dangerous (for example, while driving).
For more advanced Parkinson’s patients, there is one surgical option—Deep Brain Stimulation (DBS)—but it isn’t a cure and the procedure can only be done once, so it’s usually not recommended until the disease is more advanced.
In recent years, Oskar started to reach a dosage level that brought on the dyskinesia. While the excess movements didn’t bother either of us much initially, it was becoming quite pronounced, and when he considered that along with the increasing frequency of “off” times, Oskar decided it was time to explore DBS.
Oskar volunteered to participate in a clinical study for a new device and underwent a series of tests to see if he was a good candidate for the surgery.
One of his consults required him to go off his medication overnight so that he was completely “off” while being evaluated. Then, they had him run through a series of motor tests to record his movements on video and time how long it took him to perform certain tasks. Then they let Oskar take his medication and re-did all of the tests with the carbidopa/levodopa in his system.
Now, I have seen my husband in both his on and off states hundreds of times, but the truth is I don’t pay attention to him much when he’s off. Oskar generally doesn’t like me to help him when his meds are off and it’s frustrating to watch him struggle and a bit depressing to see him sit there motionless. Truth be told, he’s not the best company when he’s off, so I usually go do other things while he waits for his meds to come back “on.” However, during the medical evaluation, I watched intently as he went through all of his motor tests both “off” and “on.” The difference was amazing. When he was off, he had a pronounced tremor, a blank expression, softer voice and very slow movements. When his meds came back on, you could see the relief flood his face. The tremor was replaced with dyskinesia, but he was more relaxed and able to do most of the motor tests with ease and greater speed. But throughout both on and off states, he kept his sense of humor and grace and reminded me once again what a classy guy he is.
The dramatic change in his motor skills was good news, though, because how well a person responds to the medication is an indicator of how they will respond to the surgical procedure.
Oskar’s first surgery (left hemisphere) took 6 and a half hours. Time that he spent mostly awake with a halo screwed into his head, while the surgeon drilled a dime-sized hole in his skull and placed an electrode into his brain, looking for the optimal spot. They would test the location by having Oskar move his hand and leg and listen for the sound of the electrical impulses going from the brain to the muscle—basically listening for static. It took them five “pokes” to find the right location, but the doctor was pleased by the results once they hooked him up to the transmitter because Oskar responded to very low levels of stimulus.
Before the procedure, family and friends offered their support—Do you need anything? Do you want someone to sit with you in the waiting room?—and I was actually a little confused by it. This was a voluntary procedure expected to have a good outcome. It wasn’t an inoperable tumor or something… But as the hours wore on I started to get concerned; I hadn’t expected such a long time in surgery. My default coping method is denial, but that strategy requires one to keep busy so the real concerns don’t creep in. And that’s hard to do when you’re sitting in a hospital waiting room, alone, with a spotty wi-fi connection. After the successful completion of surgery number 1, I was grateful for KitKat’s company as I downloaded the day’s events to her over a glass of wine.
Writing this in real-time, Oskar just completed his second surgery (for the right hemisphere) last week. This time, they were able to place the electrode on the first “poke,” although they took two more passes at it to ensure they had the proper placement. Although both procedures were somewhat exhausting and wore him out more than he was expecting, we were glad to get past them—all jokes aside, it was brain surgery, after all. We’re anxious to get through his final surgery later this week (implanting the transmitter in his chest) to see how much of an improvement he gains when they switch everything on later in March. The large scars on his head seem like a small price to pay for the increased mobility he hopes to gain.
And there’s nothing like spending time in a hospital to remind you how fortunate you are. During these procedures, we both crossed paths with a number of people facing bigger challenges than us, and those encounters served as a humbling reminder of how lucky we actually are. We’re very optimistic about the outcome, but are trying to temper our hopefulness with reasonable expectations.
I don’t know what the future holds in terms of Oskar’s DBS results or how it might change our future, but I’m curious to find out. Yet, one thing Parkinson’s has taught me is to take it one day at a time—so you’ll find out when I do…a few months from now.