Tag Archives: california

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!

 

 

Running away from home… Cali style

As I mentioned in my last post, KitKat’s tale of Vegas fun inspired me to schedule a trip with my two best girls—my darling daughters. The impetus for the trip was to use an airfare credit my youngest had, and the premise was visiting a high school friend who had moved to LA a few years earlier. However, as I mentioned in my last post, the real motivation was trying to regain my sanity by getting out of my frenetic rut and spending some quality time with my girls.

First of all, I was just pleased that my daughters wanted to travel with me. It’s true I was paying for everything except the one plane ticket, but even so, I can’t imagine myself at that age wanting to take a trip with my mother to visit one of her friends—or at any age, for that matter. Our tastes are just too different.

I’d never taken a trip with just my girls before, but from our family excursions I knew that traveling with Lucky (22) and Blossom (19) would be akin to vacationing with The Odd Couple. Indeed. To illustrate my point, we were leaving on an early Thursday a.m. flight, so I asked my girls to drive home from their respective cities Wednesday afternoon with everything packed. Blossom arrived two days early to babysit for KitKat (whose regular summer sitter was unavailable) and had her suitcase ready and waiting in the living room the day before. Felix Unger all the way.

Lucky started the long drive home on Wednesday afternoon, forgot her contact lenses, realized it an hour into the drive, returned to her apartment to get them, and finally made it down to our house at about 9 p.m. on Wednesday night—a bit bedraggled and with a suitcase full of dirty laundry that still needed to be washed. Clearly our Oscar Madison.

Both girls were ready by the appointed time on Thursday morning, though. So after a quick trip through the security lines, we were sitting on the tarmac, waiting for stormy weather to pass. We touched down a bit late at LAX and got our rental car. Blossom (our Felix) was my human GPS. She pulled up all of our destinations on her smartphone and gave me real-time directions out of the rental car area and smoothly onto one of LA’s infamous multi-lane freeways toward my friend’s house. (Her quick-draw-with-an-app skills also came in handy later, when we were looking for a pharmacy and grocery store.)

I already knew my girls would click with my high school friend. Dot is just one of those people who can make friends with anyone—because she is interested in everyone and everything. In fact, her pseudonym comes from her role in a high school performance where she played an Uber-Geek with complete and utter commitment (something the self-conscious Stormy wouldn’t have been able to accomplish at 16). As Lucky said after meeting her, “I love her. She just radiates positive energy.” Not a bad sort to hang out with 😉 which is good, because that was our plan: An unstructured vacay comprised of some cheesy Hollywood/LA type of activities and lots of hanging out.

That first afternoon we hung out at Dot’s pool and plotted the rest of our visit. We decided to tackle Universal Studios the next day. Since Lucky graduated with a film degree and Blossom was deprived of the Disney Experience bestowed upon her older siblings, it seemed like a clever way to kill two birds with one stone. Or in my case, entertain two diverse daughters with several hundred dollars in admission and overpriced burgers.

Universal Studios was a blast. It had been a long time since I had been to an amusement park, and I was amazed by what can be done with computer generated special effects. Likewise, the studio tour was fun—spotting familiar scenes like the town square from Back to the Future (a favorite movie for our family of Michael J. Fox fans). Throughout the day, I was acutely aware that it would have been a very different experience with my husband. The crowds, long lines and sprawling theme park would have been challenging for him to navigate. It was fun to have the freedom to explore all parts of the park and not be worried about wearing out my spouse.

That evening, we went to the Hollywood Fringe Festival to see one of Dot’s friends perform. It was a sweet, engrossing play and our front-row seats put us nearly on stage in the tiny theater. After spending all day at the theme park, we were a bit tired. But since we were trying to pack as much as we could into a short vacation, we were glad we were able to catch this unique performance during our trip.

Lucky was inexplicably delighted to discover Nicholas Cage's handprints. Yes, Nick Cage.

Lucky was inexplicably delighted to discover Nicholas Cage’s handprints. Yes, Nick Cage.

The next day was our “tourist” day. We went into Hollywood to see the famous sign (from a distance), tour the Walk of Fame and people watch. Afterward, we drove to Santa Monica and had a late lunch on the pier. Lucky was excited to play in the ocean—she couldn’t recall the earlier Disney trip to Florida that Blossom missed and had no real memory of swimming in the ocean as a child. After a long day, we got home early in the evening, but Lucky wasn’t ready to call it a night just yet. She said, “You know, if I was on vacation with my friends, we’d probably go to a club or something.” I said, “You know, if I was traveling with my friends, we’d probably do the same thing.” So Lucky determined we should go back to Universal and explore the “City Walk” portion of the park—which is basically shops and restaurants and rather reminiscent of our own third-floor Mall of America. And Blossom, being Blossom, was happy to go with the flow.

hiking_LASunday was our last full day, and after the previous two jam-packed days, we decided to dial it down a bit. We texted Dot in the a.m. to see if she wanted to go hiking, and she led us on a beautiful trail up in the hills. Afterward, we hung out in her pool again, where Blossom (my usually practical child) learned you shouldn’t try to scoop a bee out of a swimming pool with your bare hand.

Dot is married to an actor. He’s not Brad-Pitt-with-paparazzi-hiding-in-the-bushes famous, but he’s recognizable, respected and steadily working…while still able to live a pretty normal life. (Which, when you think about it, is probably the level of success one should strive for, if one goes into that business.) He joined us at the pool where the girls got a big kick out of talking with him and realizing that—even though they’ve seen him in multiple TV roles—he’s a pretty normal guy, all in all.

Later that afternoon, we drove through Topanga Canyon and up the coast to Malibu to meet my husband’s sister and her husband for a seaside dinner on the deck at Duke’s. Lucky ordered King Crab legs and kept her eye out for dolphins and whales (no luck spotting them, though). I had fish tacos and the house specialty—a Mai Tai. It was fun catching up with my sibs-in-law, and I was envious that what was a vacation outing for us was just another Sunday night for them. Our Minnesota summer has been turbulent from the start, so the consistently 80-and-Sunny LA weather was mighty attractive.

Oh those vacation romances! Meet Blossom's new boyfriend...

Oh those vacation romances! Meet Blossom’s new boyfriend…

On our last day, our agenda centered around going home: Get up, shower, pack, hang out by the pool for an hour, have lunch, return the rental car and check in at the airport. (Can you see my control-freak side rearing its head?) I had timed out how long we had for each activity, but Lucky (Oscar) wasn’t operating on my timetable. We got into a bit of a tiff about it…the result of too much togetherness, I think. The fact is, I could travel with Blossom for a year and experience nary a kerfluffle—we’re just that compatible, and she’s a great traveling companion. On the other hand, Lucky and I are not much alike in terms of our hobbies, but we’re emotional twins. I’ve just been on the planet longer that she has, so I’ve learned how to fake my confidence. It frustrates me to see her wrestle with the same insecurities I had at her age when I know—KNOW!—that she has such strength and competence and intelligence inside of her. But I also realize she has to figure that out for herself, so I apologized to her once we were both in a better mood.

We arrived home tired and slightly crabby, but with some fun memories to carry us through the next long winter. All in all, the trip was a success. Not only for me getting a rare chance to spend time with my darling girls, but for being able to take a “vacation” from Parkinson’s—something, sadly, my husband can’t do. I think there are more such forays in my future (as long as I’m paying). After all, there’s some truth to this adage:

If momma ain't happy

Because I know that when I’m happy, everyone around me is happier, too. I just hope Lucky learns this lesson sooner than I did. And, more importantly, realizes that her happiness is in her hands.