Tag Archives: Parkinson’s

Stormy rises from the ashes of her own expectations

When KitKat and I launched this blog four years ago, we decided on a posting cadence of biweekly, thinking that between the two of us, we could manage an update to this blog once a week. We met that goal for the first six months and it’s been downhill ever since.

We’re more than two months into the new year and I have yet to post my annual “New Year’s” post, brimming with optimism and resolve. Never fear, I HAVE made a few resolutions and have actually made a fairly drastic change in one aspect of my life: I’ve started a new job that is consuming my thoughts and free time.

This was a big deal for me. When I started at my last job, after leaving the company that KitKat and I worked at together, I thought I would stay there until I retire. With my husband’s Parkinson’s Disease, I was anticipating the need for a flexible work arrangement at some point as his condition required me to provide more assistance. I thought that by building some job equity with my company that they would be willing to work with me on a flexible arrangement when that time came. However, when Oskar’s surgery transformed our daily lives by giving us back his mobility, I realized that I had other options. Although I liked my coworkers and my job (well, most of them, most of the time), there was limited opportunity for me to advance.dreams_dont_scare

Early this year, I accepted a new job. The company and my role are interesting and I’m enjoying it (although fully aware I’m in the “honeymoon period”). But the best part about making the switch was remembering that it’s never too late to make a change. After interviewing, I felt a bit nervous—everything sounded good about the position, but it meant going from a comfortable situation where I knew what I was doing to something unknown. And that scared me a little. Then I decided if I was a bit scared, that was a sign that I should rise to the challenge and accept the job. And KitKat had bravely made a job change a few months earlier and encouraged me to make the leap. So I did.

The day I started, my daughter Lucky sent me a quote from her aunt’s Facebook wall, it read:

“There is no statute of limitations on starting over. Re-invent yourself every day. Be the girl who walks barefoot and listens to the blues. Tomorrow, wear a trench coat and speak fierce truths. Be a phoenix. Be ashes. Burn down. Resurrect. Let go of the idea that you must always be who you have always been.”

Then she added, “You’re about to rise from the ashes…” 😉

I loved that because I needed the reminder—and I loved that my daughter sees me as someone who can continue to evolve and grow, even at my “advanced age.” I think, ultimately, that’s the theme of this blog: KitKat and I reminding ourselves—and each other—that we can be whomever we choose and strive to be our best, truest version of ourselves, regardless of the other claims on us…by our families, our jobs and society as a whole. And encouraging others to be their best, truest selves.

That’s what I want for my children, and that’s what I want for myself. And even though it’s sometimes “easier said than done,” it’s ultimately worth it.

 

 

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!

 

 

Living fearless

Sometime in my early 30s, I had an epiphany about fear. I had wanted to adopt an orphaned child (not an infant) ever since I was a kid myself, but when I finally got to the stage in my life where I could afford the process, I had doubts. I already had two wonderful biological children and a happy marriage. What if I adopted a kid who was deeply troubled and screwed all of that up? This fear was holding me back.

Meanwhile, a guest speaker at church told us about a mission trip she had taken to work with Mother Teresa in India. I won’t describe the story that changed my perspective (I’m sure it would lose something in my retelling) but the upshot of it was I realized I needed to have faith in a good outcome and plunge ahead despite my fear.quote-inaction-breeds-doubt-and-fear-action-breeds-confidence-and-courage-if-you-want-to-conquer-fear-dale-carnegie-32059

Those of you who have met my daughter Blossom know that I was immeasurably blessed by my leap of faith.

A conscious choice to “Be not afraid”

Fast forward a few years to when my husband was diagnosed with Parkinson’s Disease. A highly individualized illness, some people end up in a wheelchair in five years. Others still work for 15 or 20 years. About a quarter of those diagnosed end up with dementia. There was plenty to fear, but we made a conscious decision to not immerse ourselves too deeply in what “could be” and just focus on what he still could do in the here and now. So far, that decision has served us well, and we’ve been pleasantly surprised by the relatively slow progression of his disease.

I recently was alluding to some challenging family issues, mainly concentrated around my elderly parents, and I’ve determined that the source of these difficulties comes back to this same issue: Fear. My mother is living in fear more and more as she gets older. It’s causing her world to contract and leaving her confused and angry. It’s challenging for her adult children because the fear colors her perception—and our concern about her well-being is interpreted as attempts to take away her freedom.

We have nothing to fear but fear itself… and daycare costs

There are many times our lives require us to overcome our fear in order to move to the next phase: Going away to college, moving out on your own, interviewing for a job, asking someone on a date, proposing marriage, deciding to bring a child into the world, letting your children strike off on their own, learning to trust your adult children, learning to trust that things will work out, and finally trusting that, even when death is inevitable, God is by your side.

baby_moneyHaving a baby is a common example. Many young couples fear the responsibility of parenting. With news articles estimating that it will cost  a quarter of a million dollars to raise a newborn to age 18, it’s no wonder. Yet most of us plow ahead anyway—adjusting our lifestyles along the way—and consider ourselves the richer for it (even while our bank account takes a nosedive). Which brings me to my next point:

Bad things still will happen on occasion…but you’ll be okay

Living a fearless life doesn’t mean that you’ll experience smooth sailing from that point on. Some of the things you fear may actually come to fruition. But there is power in forging ahead anyway and usually you’ll find that 1) Most of the time the thing you feared doesn’t actually happen, or 2) On the rare occasion the bad outcome occurs, you’ll cope with it the best you can, learn something in the process and feel even stronger when you emerge on the other side. And because you’re now living a fearless life, you’ll view these episodes as infrequent storm clouds in your otherwise sunny life.

quote-you-can-sway-a-thousand-men-by-appealing-to-their-prejudices-quicker-than-you-can-convince-robert-a-heinlein-41-65-49Recent terrorist activity seems to have activated our society’s collective fear response and the result is ugly. The birth of this country was not a fear-based decision. Our forefathers (and mothers) had good reason to fear the quest for independence—after all, one man’s revolution is another man’s treason—but the shimmering ideal of a free nation was too enticing not to move forward despite their fears. Most of us lucky enough to be born in this country are here because we have ancestors that didn’t let fear stop them from leaving their homes behind in pursuit of a better life. As we watch our neighbors react to terrorist attacks by proposing fear-based restrictions on innocent people in the name of “protecting ’Merica” let’s remember that nothing could be LESS American.

 

 

When the going gets tough…

April is Parkinson’s Awareness Month, and this is a disease that impacts me daily. About a decade ago, my husband was diagnosed with PD at the age of 44. This hit us out of the blue—there was no family history to foreshadow the condition and we were attributing his symptoms to something very mundane—a pinched nerve, carpal tunnel syndrome, etc.

I could write a lot about my husband and how terrifically he copes with the hand he’s been dealt… The man never complains or feels sorry for himself whereas I’m pretty sure that, in his shoes, I’d be the hostess of a 10-year pity party.

There are lots of nuances to his symptoms, but the upshot is this: His day is ruled by his medications and whether or not they are working. We sometimes refer to it as a Jekyll and Hyde existence but that doesn’t seem quite appropriate—while it’s “good” when his meds are “on” and “bad” when his meds are “off,” the whole Jekyll/Hyde analogy makes it sound like he turns evil, when he actually handles his off times with as much grace as any human being could muster.

Recently, he came up with another analogy—when his meds are off, he’s wooden and can’t move and when they are on he becomes “a real boy.” This seems more appropriate, and the transformation of how my husband comes to life when his medication kicks in is not unlike Pinocchio.

But I won’t presume to tell his story and instead will share my own. This is what I’ve learned having Parkinson’s “by proxy”…

1) There isn’t much I can control. I have a control-freak nature. And while having children was my first lesson in learning the limits of what I can control, dealing with my husband’s Parkinson’s is like being in graduate school. I find myself reciting the Serenity Prayer a lot. It’s a good prayer. I’m hoping one of these days it will sink in.

“I know God will not give me anything I can’t handle. I just wish that He didn’t trust me so much.”       –Mother Teresa

2) There’s a method to His madness. While I think the adage, “God doesn’t give you more than you can handle” has some truth in it, I also think He likes pushing you right up against your limits at times. For example, I’m not the stop-and-smell-the-roses type. For a Midwesterner, I’ve got a rather intense East Coast approach to life and Parkinson’s is a condition that could try the patience of the most easy-going Southerner.

When I would think of my husband or myself dealing with illness, I imagined being struck with a more common condition, like cancer. This is a horrible, awful thing to deal with—no doubt about it. However, in many cases you can “battle” cancer, and if you’re lucky, you can win. Trust me, I’m not wishing my husband had cancer instead of Parkinson’s, but I sometimes think that fighting cancer would be more in line with my temperament. I like to think I would bravely don my armor and be at his side to help slay the dragons. But Parkinson’s isn’t a dragon—it’s the mosquito in the room whose buzzing keeps you up all night and slowly drives you insane.

There’s a David Byrne song with some slightly blasphemous lyrics that captures my perspective on this, “Green grass grows around the backyard shithouse. And that is where the sweetest flowers bloom. We are flowers growin’ in God’s garden, and that is why he spreads the shit around.”

Now, I don’t believe in a spiteful God, but I do think He is aware that my Serenity Garden is a bit overrun with weeds–and that my husband’s illness is part of a larger plan intended to help fertilize the flowers.

3) God provides help where you least expect it. Despite the negative lessons I’ve learned about myself, I’ve also learned that I’m not completely on my own. While testing me big time on the patience front, God has also sent some unlikely angels to support me through this process. People who accept me despite the aforementioned shortcomings. I’m very thankful for these people in my life.

Diamond or basketcase? The jury is still out...

Diamond or basketcase? The jury is still out…

4) We all need to cut each other some slack. There’s one aspect of my lack of patience that I’ll accept, and that is my growing intolerance of hatred and judgment and negativity. Life can be tough. But most of us are doing the best we can, and we all need to remember that. When it comes to disability awareness, I’m probably on the “more enlightened” end of the spectrum having worked for two organizations serving people with disabilities and consequently spending a lot of time around people with various conditions. Despite this experience, I cringe when I think about past incidents where I might have thought someone’s slowness was just disregard for other people’s time or assumed that someone’s lack of balance was the result of too many drinks. I know there are times when my husband’s symptoms are probably misinterpreted and that if others knew the true cause they would be more tolerant and considerate as well.

5) It’s anybody’s guess. Parkinson’s is a very individual disease. While there’s a typical progression to the illness, not everyone experiences their symptoms the same way. Some people’s illness progresses very quickly, others more slowly. I have no idea exactly what’s in store for my future–but then again, does anybody? I also have no idea how well I’ll continue to cope with it all. My only hope is that I continue to recognize the blessings in my life and appreciate those who are helping my husband and me along this journey.