Stormy & KitKat for office? That’s just the ticket!

Someone recently posted on my Facebook page, “Stormy for President! I’d vote for you…” This made me laugh because I view politics as a necessary evil and generally identify as an Independent. I usually have very little to say on the topic and have only been opinionated this year because a madman is in the race. However, the post got me to thinking: “If I were running for president, what would my platform be? What are my beliefs and how do they define me?”

True to my apolitical roots, I’m going to stay away from foreign policy, gun control, and economics (although I have opinions on all of the above) and, as I’m running an honest, transparent campaign, I’m going to tell you what I really believe.*

It’s never too late – Maybe I’ve watched Scrooge too many times, but I honestly believe that everyone has the capacity to change—and at any time—so long as they want to. I keep hoping that will be the case with my 89-year-old mother, but I’m trying to balance that by having no expectations that she actually will change. That’s a tricky balance.

Find a penny, pick it up. All day long you’ll have good luck – I never walk past a penny on the ground without stopping to pick it up. It’s not that Stormy is cheap, but she is thrifty. At one time lack of finances was a very real issue for me, so I like to remind myself how far I’ve come and remember that it still is an issue for many others. Even if I’m blessed with a comfortable lifestyle, I never want to discount money’s worth—even if it’s a lowly penny—out of respect for those who must save every cent.

He who hesitates…is going to have to wait for me – I adhere to the rules of the road (in most cases) but if we come to a stop sign and you don’t go when it’s your turn, I’m not going to sit around waiting for you. I’m going.

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This jacket actually has Stormy looking forward to cooler weather…

Smart people buy used – There are people out there who think buying used is for “poor people” and won’t purchase anything that’s not in the original packaging. Poppycock. You get way more for your money buying certain items used (cars, clothes, everyday dishes and glasses). I’ve admitted to being a bit of a clotheshorse, but people don’t realize how much I purchase secondhand: Like my cashmere sweaterdress from Neiman Marcus, the Missoni dress I wore to my niece’s wedding reception or my new favorite: The black leather moto jacket I bought from ThredUp. The best thing about buying consignment clothes is you get a preview into how well they will hold up and can get high-quality threads for knock-off prices.

If you’re having a terrible day, end it – No, I’m not advocating suicide…just an earlier bedtime. Occasionally, despite our best efforts, some days just suck more than others…but getting a good night’s sleep can improve your whole perspective.

If you’re having lots of terrible days, do something about it – If your circumstances are making you miserable, change them. Oftentimes, the biggest hurdle standing between you and a positive change is your own attitude. Maybe you can’t make a wholesale life change (like quitting your job) immediately, but you can take steps toward change (like updating your resume or brushing up on a skill that will make you more marketable). If you absolutely cannot deal with your circumstances OR if your life is good but you’re still miserable for some unidentifiable reason, PLEASE SEEK PROFESSIONAL HELP.

All things in moderation – Fanatics (of any type) scare the shit out of me, so I stay away from environments that encourage fanaticism (sports play-offs, political rallies). I also try to understand both sides of an issue, because there are very few situations that are as black and white as they first appear. But I’ve found that this moderate approach works for other things as well. Dieting? If you deny yourself your favorite foods, it’s probably just a matter of time before you fall off the wagon. If you satisfy those cravings with a moderate amount of chips (or whatever) on occasion, it may take a little longer to lose the weight, but you’ll be more likely to stick with your overall eating plan.

Big changes start with small steps – There’s power in motion and sometimes great achievements are made through lots of little mundane steps. When I was working toward my bachelor’s degree, I was married and raising small children, while also working part-time. Progress was slow, but 11 years later, I had a degree. That success also led me to earning an MBA a decade later…(Thankfully, it didn’t take a decade to earn that one!) The habits-quotespoint is, those achievements were the accumulation of MANY mundane steps, but by sticking with them and keeping my eye on the finish line, I got there. This same principle can be applied to so many things. As Woody Allen said, “80% of success is showing up.”

How about you, KitKat? What does your “platform” look like? (And no, I’m not talking about shoes…)

KitKat Weighs in…

It’s KitKat, remember me? I have been a bit quiet as I adjust to a new job while balancing my normal chaotic family schedule. But, there is nothing like a political debate to pull me out of the shadows. Having divorced parents on two opposite sides of the spectrum, I have grown up listening to opinions shared with extreme passion. I learned that it is ok to express your beliefs, and a good family debate is sometimes a great way to firm up your own convictions and even counts as quality family time.

Though I found Stormy’s expressed beliefs undebatable (including the madman), I thought I better add mine to the ballot. Who knows, she may ask me to be her running mate!

Share the real things – I love seeing everyone’s photos documenting all the bests, but don’t forget to share the other real things too. Friends, acquaintances and even random bloggers, who have opened up or provided self-deprecating humor about struggles with kids, marriage, or other life issues have helped me in ways they will never know. Hey, it is nice to learn you’re not a freak with weird thoughts and emotions that no one else could imagine. It’s not about a bitch sessions. It’s just about being real. Otherwise, we all would just see the snippets from Facebook and wonder why our lives aren’t always made up of countless shiny moments like everyone else.

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KitKat shakes things up by taking her fear of flying on a seaplane in Seattle

Shake things up Try new things, learn new skills, meet new people and make different mistakes. Sometimes my risks are bigger like quitting a safe corporate job to join a start up and sometimes it is as simple as changing my hair color. Shaking things up keeps me awake. “To dare is to lose one’s footing momentarily. To not dare is to lose oneself.” – Soren Kierkegaard

Keep moving – Sometimes you just can’t fix a rough day or bad situation, but just physically moving will help get you out of the wallow of self-pity. Twisting your body into different yoga poses. Taking a walk outside. Or my personal favorite: turning on music and dancing. No, it may not fix anything,  but it provides a momentary escape from a really crappy day.

(This may sound like a contradiction to Stormy’s “end it” advice but think of it as an alternative to those of us who don’t have the luxury to go to bed early. Stormy and I support all lifestyles.)

Your life isn’t all your own – There are many great readings on how to be happy and do what is right for you. I devour these when I see the posts. Who doesn’t want to grow old knowing they were fulfilled in every way? But the real truth is life isn’t all about you. There are friends, family, kids and even strangers who also count. Sometimes you have to make sacrifices or do things for others that may mean giving up some more selfish choices. Your life is part of a community. People who are there to share in the highs, and pick you up from the lows. Your peeps, those you know or will know, are part of your life and decisions. And that is ok—you need them!

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You never know what kind of a fairy you may encounter!

Let children believe – Soon enough we learn fairy tales don’t always have happy endings. But let them discover that themselves. So at my house Santa and the Easter Bunny are real, or at least nothing any of us question aloud, so they will keep visiting. And of course I was a fairy in my 20s with all kinds of mystical stories to share with my daughter whose deepest wish is to also become one. And, I am going to let my son think he has a solid career plan, being that if he doesn’t get recruited by the NHL or MBL, he came up with the fallback job of  being a pro-sports lawyer. No reason to crush his dreams with realistic expectations at 13. Plus, it is fun to hear all the things he is going to buy me when he is rich and famous. Let children believe in the whatever after. I find that going along with their imaginations lets me believe a bit in magic and wish bigger too.

Words count – Words hurt, much more than sticks and stones. The things we are told stick with us. Some of the comments told to us out of anger or disappointment, haunt us later. You may be surprised how much someone held on to words you forgot you spoke. It is ok to be honest and tell people the truth. I advocate for not being passive-aggressive and as I mentioned above, being real. The hard part is to remember to also go back and share when you don’t feel that way anymore or when they have made amends. Words also have power to heal. (This is something I am trying to remember in dealing with my own kids—especially navigating around a temperamental pre-teen.)

Arguing is ok – Simply put, if I am not willing to argue with you, that’s when you know something is wrong. There is passion in caring.

Embrace everything that has shaped youEveryone has made some choices that they may go about differently given the chance. But it’s not just “right” choices that form the better you. Sometimes it’s the other paths where you learn the most. I may not want my children making some of the choices I did, but I hope they safely make it through some unchartered journeys. Instead of living in a cloud of regret, remember the things gained or experiences had. The skeletons in your closet are also your treasure chest of memories and learnings. For example, the R-rated job I took up in college; sorry Mom and Dad but I am still glad I was dumb enough to make that bad choice. Love all of your story—it is what makes you interesting.

Some things are best left alone – As much as I stand for trying new things and always improving, sometimes we need to realize when we already have something good and just leave it alone. For example, take Swedish Fish Oreos. How could someone take one of the best candies, which I will eat until my teeth actually hurt, and combine it with a favorite classic childhood cookie. You took two greats and transformed it into an awful. Another example is taking a yummy piece of bread and then dipping it in a bowl of creamy tomato bisque. Now you just created wet, and pinkish, bread—gag! (I loved those hot lunch trays in elementary school that kept my foods separate.) Basically, don’t ruin a good thing when you have it.

What do you say, Stormy? Should we throw our hats in the ring? The way most Americans feel about their choices this year, we may actually stand a chance.🙂

*This list was inspired by another blogger whose work Stormy admires. See the original post here.

The family you choose…

At the beginning of summer, my company lost a dear colleague unexpectedly. This woman was the kind of person who had friends everywhere—at all levels within the business, in all geographies—and it sent everyone into shock and mourning. Fiona had relocated to the US from our UK office but was born and raised in Ireland. During the last decade, she worked mostly in Minnesota, spent a couple of years running our India office, and patched together a wide network of friendships that included coworkers and even clients. During her brief hospitalization and subsequent death, the closest of those friends gathered together with her parents who had flown over from Ireland to help plan her services, settle her affairs and share a decade’s worth of memories, laughs and tears.

At her memorial service, someone referred to these closest friends as the “family Fiona chose” to surround herself with when she was far away from her actual family back in Ireland… and that phrase stuck with me… I think we all do this, to some extent. Even when our actual families are just down the street.

friend signThere is an inherent difference between family and friends—at least in my introverted view of the world. While regular friends are a great addition to one’s life, they can invoke a bit of anxiety for an introvert: Do I seem friendly enough? Am I being “fun”? Am I acting like a dork? (Shades of junior high.)

Family is another matter. They’re stuck with me—in all of my dysfunctional glory. If a family member drops by unannounced, I throw open the door without worrying that the house is a mess. If there’s a lull in the conversation, I’m not compelled to fill it. They can see me without my make-up or with a stain on my shirt and I won’t lose sleep over it. We can bicker about something, but I know they’ll love me anyway. Sometimes, however, despite our love for our families, we don’t always share the same views or interests. And so we may not hang out with them the way we would a friend. But when friends and family come together in the same person, it’s a beautiful thing.Clean

I have lots of acquaintances, but I have a smaller number of “friends” and an even smaller subset of friends that I would classify as “family I choose.” But when I realize someone has reached this hallowed status, I try not to take them for granted.

KitKat, for better or worse, has reached this status. We’ve known each other for 18 years and know the ways in which we’re different and the ways in which we’re exactly the same. I can always trust her to “give it to me straight” when I need a dose of reality. At the same time, if I’m anxious or upset about something, I know she’ll say exactly the right thing to calm me down. Since KitKat’s the oldest girl in her family and I’m the youngest in mine, our relationship gives me the chance to be the big sister and her the chance to be the little sister… Because, alas, I’m four years older, I’ve undergone certain milestones first. Both the good (marriage, children) and the bad (turning 50). For all of that, it works well. After all, I’m capable of giving awesome advice (even if I don’t always follow it myself) and KitKat is great at helping me envision a better version of myself.

I’m blessed to have a few other friends in this category as well—and also a couple of family members who I think would still be “chosen family” even if they weren’t already sharing the same last name.

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This one is dedicated to Fiona.🙂

At my colleague’s memorial service, it was clear that her chosen family knew they were special to Fiona. She made a point of living her life that way. Her death was a reminder to make sure my own “chosen family” understands what they mean to me.

 

Chasing rainbows

I know what some of you are thinking… “I started reading this blog because Stormy and KitKat promised they are more messed up than me. But now all I’m getting are introspective posts on world politics, brain surgery and death. I want to know how is Stormy handling being 50? What about the move? Is she still crazy?”

So for those of you looking for some shallow reading—the beach blanket chick-lit version of this blog—Stormy is happy to oblige. It’s the middle of summer and I’m exhibiting my usual, “Wait! Slow down!” despair as I contemplate the dwindling number of free weekends in which to schedule my summer must-dos. For example, I’ve had my boat for four summers now, and have yet to get KitKat and family out on it!

popeye-I-am-what-I-amI’m also in a weird mental place right now. There is so much that’s going well in my life, but for some reason I’m feeling aimless and dissatisfied. Do I need a new job? Do I need a new hobby? Do I need to just quit bitchin’ and appreciate my blessings (my money is on the latter). I need to figure out what the next phase of my life looks like.

It turns out that being 50 is okay (well, I’m actually 51 now). I still can’t believe I’m in this decade, but I just try not to think about it (denial is my friend) and keep doing what I’ve always been doing and wearing whatever I like. I believe in being comfortable and true to myself, yet I don’t want to get a lecture from my girls (“Mom, what are you wearing?… Really?”) so I try to temper my need for self-expression with a little common sense. I trust that they’ll tell me if I push the limits too far.

mature?I had an epic revelation the other day: I looked at my husband and said, “Woah. I just realized that I’m as mature as I’ll ever be. I probably am not going to mature any more than I am!” He laughed, but I pointed out the irrefutable truth of the situation: By the time a person turns 51, that’s pretty much it. That individual isn’t going to get a whole lot more mature. For some reason, I found that oddly comforting…knowing I’ve reached an age where I no longer have to worry about trying to be older or more sophisticated or younger or hipper. I am what I am (a favorite saying of both God and Popeye). In other words, this is it, folks. Move along, there’s nothing more to see here.

On a brighter note, Oskar and I are celebrating the anniversary of our move into our downsized digs. This was a monumental effort last year—I still get exhausted just thinking about it. On the other hand. I L-O-V-E LOVE our new home. It’s the perfect size. It’s in a perfect location. I love having a new space to decorate. I also love having very little maintenance work. And although I had a tough transition in seeing my little chickies fly the nest, now that we’re out of their childhood home, I love living the life of an empty nester. It’s sort of like being newlyweds again except now we have more time (we were only married for a little over a year when I got pregnant with my oldest) and more money.

shark5Which brings me to the last update—you’ve already read about my husband’s successful surgery, so the big question on everyone’s mind (well maybe not, but it’s on my mind, at least) is what’s next? I wish I knew. I know myself well enough by now that I realize I always need some type of project to keep me focused and happy, and right now I don’t really have that and I feel like I’m floundering as a result. It’s an uncomfortable feeling, and I’ll keep searching for that “thing” that will make me feel grounded. I’m not sure if it will be work, school, a hobby or volunteer work, but I’ve always lived my life like some species of shark—that is, I need to keep moving or I know I’ll drown—so I’ll keep chasing rainbows until I find that emotional pot of gold. I haven’t figured out the answers yet (another example of “easier said than done”), but as soon as I do, you can be sure I’ll let you know!

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.

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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!

 

 

How to tackle a to-do list

I am constantly beating myself up for all of the things I don’t get done. The never ending, always growing to-do list is my daily reminder of all the things I failed to accomplish each day. Around 9:00 p.m. each night, once I am home from work, everyone is fed, back from various activities and a bit of quiet has settled in the house, I look at my to-do list on the counter and inevitably choose to sit on the couch and watch a show instead of tackling something productive.

Sadly, I end up not even enjoying my relaxation time because I am haunted by thoughts of what I should be doing instead and how I failed to make the most of my time. These nagging feelings continue to build nightly. Then, eventually, one evening I am so overwhelmed, crabby and stressed that I lash out. Like when I walk into my daughter’s room, filled with the strangest hoarding collections that could trigger an avalanche. Or I open up my son’s daily grade information online and see homework assignments he didn’t turn in or a low score on a quiz in an easy subject…which just proves his lack of effort. (The negatives to both a parent and child from giving parents access to a kid’s daily school life is a whole other blog in itself.)

I will say both the kids deserve “the talk” they get after these encounters, but maybe not with the level of frustration present when I snap.

After one such instance, I finally decided it was time to whip myself into shape. I decided to organize and figure out what I was actually doing with all my time so I made a list one day. (Yep, another list!)

  • Woke up for Pilates
  • Came back home and got kids ready and on the bus
  • Went to work
  • Grocery shopped over lunch
  • Back to work
  • Got dinner served and eaten before son’s practice
  • Answered a few quick work emails
  • Helped daughter finish cereal box book project
  • Quizzed son for the next day’s science test
  • Tucked in daughter
  • Went back to daughter’s room to explain why I couldn’t go on tomorrow’s  field trip (was less comforting and more annoyed as 20 minutes passed until I yelled,“Just go to sleep!”)
  • Looked at to-do list but didn’t do anything
  • Watched a show
  • Went to bed

The next morning I looked at my “what happened today” list and was somewhat impressed with all I got done. Plus, the cereal project box wasn’t part of the normal routine and did suck up my time that was available to work off my to-do list. Also, usually grocery shopping would be on my to-do list for the week, but running out of milk that morning forced the quick lunch-break shopping trip. I decided to add those two items on my to-do list and then immediately crossed them off. Strangely, that felt great.

In fact it felt so good to cross something off the list, I started adding things like, “do the dishes,” “work out,” and “fold laundry” to my weekly to-do list just so I could actually cross something off. It was a high being able to cross something out each night. This “cheat” helped me let go of all the other things I wasn’t actually getting done. It also helped me feel like I was a fairly productive person. I certainly felt better while on the couch watching Orphan Black.

I am now in the process of changing jobs with an unheard of luxury of one week off before I start my new position. This week, I had big plans of productivity with all the extra hours I was granted. So, what did I do? I made an even bigger list, of course. The first day I actually was able to cross off “organize the linen closet” but that was it. Though, I did think often about how in 20 minutes I would get up and conquer more of my list.

“Every passing minute is another chance to turn it all around.” Vanilla Sky.

(Yep, I should have added watching old movies with a glass of wine in the middle of the day to my “week off” to-do list.)

Until Thursday morning, I really didn’t stress too much about not doing anything at all. But then I felt that shadow of panic and self-blame approaching. Thank you to Stormy for the reminder that maybe I just needed to relax and do nothing. I am really happy her advice wasn’t just to get up and start doing something. So, I added “relax” to my list and enjoyed the day free of guilt.

Interestingly, on Friday I woke up, made coffee, organized my own closet, got rid of clothes, cleaned the house, bought a living room rug, wrote a blog, signed the kids up for summer camp, did some work to prepare for my new gig, and planned the next week’s meals. Maybe there is something to be said for giving yourself a break once in awhile.

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.

2016: Stormy’s year to “Choose Different”

New Year’s and its related resolutions are a perennial theme for KitKat and me. (YES, we’ve been doing the blog long enough now to have “perennial themes”—and the fact that this blog started out as a resolution proves my point, I think…)

From vision boards to attitude adjustments, we’re both a bit obsessed with self-improvement. Or at least identifying our shortcomings on a regular basis (ha, ha). Seriously, with how much I think about these things, I should be perfect by now. But as you probably realize, thinking and doing are two different things.

While I can be decisive and even a little impulsive, and I sometimes abandon my efforts when they don’t yield immediate results, I’m also a big believer in adopting the approach of the tortoise over the hare—slow and steady wins the race—and over time, small incremental changes can have a large impact on my life. Case in point: the bachelor’s degree that took me 11 years to earn.

Most of the time, it’s just about the choices you make.

Back when KitKat and I worked together, I had a 2 p.m. pop habit. (I suppose I should explained to some of our unenlightened readers that “pop,” not “soda,” is the proper nickname for carbonated beverages like Pepsi, or in my case, Diet Coke.) Each workday at 2 p.m., I’d saunter down to the break room and stick my two quarters in our company-subsidized (boy, in those days we were livin’ large!) vending machine. You could almost set your clock by my daily pilgrimage.

diet coke imagesWhen I left that job, I was unemployed for a while and quickly got over the need for my 2 p.m. caffeine jolt. However, on my first day with my current employer, I found myself in the breakroom at 2 p.m., dollar bill in hand (no subsidized vending machine there!) and as I was about to slide my money into the slot, I asked myself, “What am I doing?” Here I had successfully broken myself of a habit that was unhealthy and I nearly resumed it based on…what? A habit? A memory? I made a conscious decision NOT to buy the pop and have consumed very little since then—about 10 cans a year vs. the previous 60 or so.

GR_headerbooksThis remembrance inspired my resolution for 2016. What could I accomplish by simply making different choices? I was reading Gretchen Rubin’s book “Better Than Before” about the process of creating and breaking habits—if you’re a self-improvement junkie it’s a must-read. Around the holidays I received her e-newsletter, which included an article about choosing a New Year’s theme instead of a resolution. This theme would consist of a word (or words) that would guide decisions for the upcoming year: “Health,” for example, or “Learn.”

As someone with new-found time on my hands after our recent downsizing, I wanted to get in touch with activities I wasn’t able to pursue when I was taking care of a house and three kids, so I originally was going to make “Discover” my theme for 2016. Then I realized that word wasn’t broad enough to encompass the other changes I wanted to incorporate into the year ahead, so I revised my theme to “Choose Different.” This has a few meanings for me: One is synonymous with “Discover”—because I still want to explore new interests. But “Choose Different” also reminds me to challenge my dysfunctional thinking patterns and alter behaviors that haven’t been serving me well.

Apple

Srsly? I chose a variation of an old Apple slogan for my New Year’s theme? How derivative!

We’re only three weeks in, but so far it’s yielding some positive results. One change I made was to force myself to be less of an introvert at work. It’s something I’ve told myself I needed to do a dozen times before, but a 360 review coupled with a tongue-lashing by a coworker friend convinced me I needed to make a change. Well, it hasn’t killed me and it IS improving some relationships at work, so I’ll keep plugging along until it feels natural. There are other examples as well, and I’m curious to see where this theme might take me in 2016. I guess that is one of the benefits of getting to 50. I can see the horizon ahead and know that even if I don’t get to my self-actualized destination overnight, I can become a better version of myself along the way…simply by making smarter choices most of the time. Are you making any changes in the new year? Please share in the comments…