Tag Archives: DBS

Test driving the new brain

In my last post, I explained the process my husband was undergoing for brain surgery. I’m happy to report that the results are better than either of us were expecting. I’ve described his off and on periods before, but this video shows his results better than I can explain. The “task” is to go back and forth between two pieces of tape as fast as he can. In the first snippet, he is completely “off,” no DBS, no meds. In the second, both are working together.

The beauty of his DBS device is—even when his meds are “off”—he still has about 70-75% mobility, compared to about 20% without the device (see the chart below). As you might imagine, this has been life-changing. (Editor’s note: That’s not a word I use lightly—I once wrote an article about getting braces as an adult and the magazine publisher wanted to edit it to have me say it was life-changing but I refused to put straighter teeth in that category. My teeth weren’t horrible to begin with and it was really more of a vanity thing.)

For the first couple of days we were stunned—we kept waiting for Oskar to go “off” to the extent he had previously and it never happened. Well, actually it did one evening when we were going out to dinner. Oskar felt the familiar slowness associated with being truly “off” and we were both a bit depressed—thinking the results had been too good to be true—only to discover afterward that he had accidentally shut off the device. He pressed the on button and surged back to mobility. It was truly a miracle.

Oskar and I realized over the next week or so that many things that had been difficult or impossible for him to do while “off” were, once again, on the table…such as:

  • Driving
  • Cooking
  • Going to Target (invariably, if Oskar tried to go to Target while his meds were on, they’d crash on him just as he was needing to maneuver the checkout line/payment process)
  • Visiting his deceased mom’s elderly partner, Harold (see driving, above)
  • Riding a bike
  • Hiking
  • Standing while waiting for a table at a restaurant
  • Taking walks around the park
  • Sight-seeing

Actually, that last one was my realization and I thought, “What better way to test-drive his new brain than by going on vacation?” We had had a grueling, busy winter and were ready for some fun in the sun, so we booked a spontaneous trip to California to visit some friends and Oskar’s little sister—and to see how much of a contribution his DBS device would make to our vacation.

DBS_chart

The vacation was enlightening. The first night, we stayed with my high-school friend Dot and her husband. We had a fun afternoon and dinner out, catching up on Dot’s new hobbies (painting and pottery—which reminded me that I have to make time for more art in my own life) and her husband’s acting career.

The next day, after going out for breakfast, Dot was chained to her home waiting on an important delivery, so I decided to take Oskar on the hike we had done with Dot and my girls on our last visit, in a park near her house. I remembered the trail as being fairly long, but not too strenuous, and it had beautiful views of the LA area. Still, it was the type of hike that Oskar would have had problems with in the past—but I wanted to see if the “New Oskar” could handle it. We found the trailhead and headed up the path. The trail went up…and up…and up… I kept asking him, “Are you okay?” “How are you doing?” “Do you need to rest?” and each time he said, “No, I’m fine…” And here’s the thing: He WAS fine.

The next day, we went to meet Oskar’s little sister and her husband. They’re both scientists working for a biotech company and have a lovely home in Thousand Oaks. We had dinner at an interesting outside restaurant in the Santa Monica mountains. The next morning, we sat out in the backyard contemplating how to spend the day. (Interesting observation: Oskar’s sister and husband have a lovely backyard, complete with swimming pool, but don’t spend much time in it. “Do you entertain out here?” I asked, thinking of my love for outdoor parties. “No, not really” was the reply. It was a clear geographical difference—in Minnesota, it’s nearly mandatory that if it’s nice, you’re outside. No debates. We don’t have a lot of nice, warm weather, so we cherish every sunny day, and nobody knows how to celebrate the beauty of summer like a Minnesotan. California, on the other hand, sees so many nice days that its residents TAKE IT FOR GRANTED. This is nearly an unforgiveable sin, but our hosts did a good job of indulging our craving for Vitamin D.)

We grabbed a bottle of champagne and headed to an oyster food truck that parks along the ocean in Ventura. We ordered a variety of oysters—raw, fried, baked—and had a picnic on the beach. It was awesome. Oddly, my sister-in-law had gone running on the beach past the food truck many times, but had never stopped for oysters. So our visit prompted her and her husband to try it out. How many great experiences do we all overlook in our own hometowns, and how many cool things might we discover if we looked at our city through the eyes of a tourist?

Afterward, we went to a microbrewery and continued our day of indulgence. Later, we went up the coast and met an old college friend of Oskar’s at another microbrewery. (Do you see a theme here?)

IMG_3109The next few days were spent in the Santa Barbara wine country and one day consisted of a long day trip up to Big Sur and Carmel. All along our trip, I was evaluating how Oskar was handling things. He was able to drive more than he normally would (although I drove most of the PCH, he took the wheel for most of the route home).

On our last full day, we visited a number of wineries. We noticed that for the first time since Oskar’s DBS device had been switched on, he was experiencing some noticeable “off-time.” This tempered our “New Brain—New Life!” outlook a bit, and we were both a little quiet and reflective. What seemed too good to be true apparently was.

We returned home and back in his everyday environment, Oskar quickly rebounded to his new-and-improved self. We decided that Oskar’s off periods while on vacation were caused by a little too much beer and wine, combined with him taking a more lax approach to his medication schedule.

The vacation had mixed results… We learned that Oskar’s surgical success didn’t mean he was cured, but we also discovered that it was possible to turn back time to a point where Parkinson’s didn’t rule our lives. And we have to admit, we’re pretty excited about that!

 

 

Well, it’s not rocket science…

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.

brain surgeryOskar’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.

It's a good thing scars on guys are "rugged and sexy"...

It’s a good thing guy’s scars are “rugged and sexy”…

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.