Monthly Archives: May 2016

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!