When Parkinson's becomes a person

“It's my arm. In the shower. It just kind of shakes when I reach back to wash my hair,” my future father-in-law said. “Maybe it's a pinched nerve. I'll get it checked out.”

 

Without another thought, we moved onto other topics, like his recent retirement from Chrysler, where he'd spent his working life as a successful automotive designer. My father-in-law's brain was of the unique sort, in that it was both creative and logistical, very balanced. This quality allowed him to create and patent many of the very features those of you reading this use daily in your vehicles.

 

An hour or so later, my future family of in-laws, my then-boyfriend, Jon, and I sat down to dinner. It was a brisk fall evening in Bloomfield Hills, Michigan, about 20 miles north of Detroit. The night was quite cozy and perfect, Fall at its best. Thanksgiving and the beginning of the holiest season was a few weeks away. The diagnosis was even closer.

 

It was on the way back from my first Thanksgiving spent away from my family of origin, in a car at a gas station in Ohio, that my future husband would explain his unusually somber attitude, and why his mother had started crying as we said grace at dinner. We sat in a car, alone while the gas tank filled. Silence and pause thickened the air, and then Jon spoke. His father had been diagnosed with Parkinsons disease, the same demon that had claimed his maternal grandfather a handful of years ago.

 

Calm, and collected, and still in shock by his dad's diagnosis, my husband attempted to prepare me for what was to come. For what his mother would have to endure, again, but this time as wife, instead of a daughter. For what the whole family would have to shoulder, as a result of loving his father. It wasn't about how we'd have to care for him, or how we'd have to comfort him; it was about how much it would hurt to witness him.

 

My father-in-law's symptoms started with the typical tremor. It was virtually unnoticeable. Aside from his own struggle to come to terms with his diagnosis, he was pretty much the same man he'd always been – except, with a small tremor in his arm, and not even all the time.

 

With each year that passed, his Parkinson's crept more and more into his being. There were good months, in which it didn't seem to spiral downward too badly. But, for every good month, there was an equally bad one, in which he learned – we learned – of the newer and greater consequences of a brain affected by such a disease.

 

 

That word that's on the tip of your tongue? Forget it. That's where it will remain, like a almost-sneeze, that never comes.

 

The hands of a talented artist become a burden, because the artist's brain can no longer control them.

 

Eating a meal revolves around how eating may affect a Parkinson's patient in conjunction with when he takes his medicine. God forbid the individual have too much protein and not enough dopamine-inducing foods, like carbohydrates. His meds may not even work. Just the anxiety of thinking about what a new restaurant may or may not serve is enough to set a Parkinson's patient into a rappel of anxiety.

 

Parkinson's steals pace. You move slowly, or sometimes not at all. Or sometimes, too much, like Michael J. Fox, who suffers from dyskinesia, which is a side affect of some of the medications he takes.

 

Parkinson's robs empathy. The brain can no longer register the hows or whys behind someone's, or even one's own, emotions.

 

Parkinson's takes the voice. The brain can't tell the muscles to do what they're supposed to do, so therapy is often needed simply so an individual can maintain the ability to speak. And, when he speaks, the wrong words often come out, and not for lack of intuition. The Parkinson's patient knows the concept he wants to get across, but he no longer has the capacity to put it into words.

 

That all being said, now imagine you're Robin Williams. You've suffered depression your whole life. You've battled addition. And, the only thing that's gotten you though has been the ability to give the gift of laughter to others through your lightening wit, your rapidly interchanging impressions, which are always accompanied by movements even the most adept camera operators can't capture quickly enough.

 

 

Then, you're told you have Parkinson's.

 

You will lose the ability to empathize, and love – something Robin Williams did very well.

 

 

You'll lose your legs. You won't run from Camera A to Camera B.

 

 

You'll lose your arms, and all the waving around and expressing.

 

 

You'll lose your tongue, and your ability to manipulate it, along with your diaphragm when altering your personality to get a laugh.

 

 

Lastly, you'll lose your wit and speed. And, this is not a negative outlook. This is fact. Parkinson's slows down everything, both body and brain.

 

 

Can you even imagine how scared Robin Williams must have been?

I still see glimpses of my father-in-law in the hours his meds work. He can still pair paint colors like no one's business, and redesign the front entry way of my home in a detailed, architectural drawing, even if it takes him days to draw it out, intermittently, among all his highs and lows.

 

When his meds suddenly stop working, leaving nothing but the frozen shell of a man who could move just five minute earlier? I have also been the one to hold him for ten minutes as he tries to walk his lead feet down the two front porch steps at our house to get out to my in-laws' car. I've reassured him I can hold him, over and over and over again, as his anxiety rises and he fears he may fall. In those moments, the artist is gone. It's simply Parkinson's versus a man. A man I could carry down the steps, but won't. Of the little dignities he has left, this is one. He will walk.

 

And we, who love him, will wait.

For more information about Parkinson's, I've found the Wikipedia (http://en.wikipedia.org/wiki/Parkinson's_disease) explanation to be the most well-rounded. You can visit the Parkinson's Foundation Web site, but I feel good ol' not-usually-totally-reliable Wikipedia does a pretty good job of describing the neuropsychiatric symptoms of it. And, these are symptoms I don't think the general public is familiar with. In my opinion, they are by far the most crippling.

My Sixth Sense

I've been called a lot of things throughout my life, and most of them I have deserved. The one thing I'm uncomfortable being called, however, is psychic.

As a young woman, I can remember having coffee with my dad at the Caribou next to my family's jewelry store. We'd be munching on muffins and sipping coffee, chatting about our day, discussing our friends and acquaintances just to end the conversation to have whomever we'd been speaking about walk through the door.

"How weird is that? We were just talking about him," my dad would say, in disbelief.
"I know," I'd counter. "But, so typical of us."

Since I've been a little girl, it was clear my dad had an intuitive connection. As I grew older, it became evident I inherited it. While neither of us has honed it, or can control it, we often speak, dream, and think in advance.

My dreams, specifically, are a nuisance. I dream about rainbows, and the next day it rains unexpectedly while it's sunny outside. I slumber and see wildlife, and the next day a bear crosses the road in front of me. I dream of someone wearing a George W. Bush mask, and the next morning, W. is quoted on "The Today Show." I have a dream my ears hurt, and the next day, Silas gets an ear infection. I saw detailed aspects of the house in which I currently live in my dreams. I drive roads before I've driven them, and walk staircases before I've known they exist. It's things like that, and they never end.

I also talk to a lot of dead people in my dreams. I don't think this is all too unusual, as I'm usually speaking to people I've had a close connection with. Two days after my friend Tammie passed away, and while in the midst of contemplating what to say in her eulogy, I dreamt she showed up at my front door. I opened the door, and looked at her, confused.

"Tammie ... I don't understand. You're dead," I said.
"Aw, sweetie, I'm right here. I'm Tammie 2.0!" she exclaimed, joyfully, swirling around to show me how great she looked. I chalked that one up to some sort of reassurance she'd made it to Heaven and was enjoying her new, spiritual body.

My Grampa Bob and I have taken walks throughout nonexistent cities. We've met for dinner in my dreams. He's been dead for nearly 8 years.

The night my Baube died, I went to sleep just to find her waiting for me, sitting in a chair.

"How will Silas remember you? He's so young. He can't forget you. How do I get him to not forget you?" I asked her, in a panic.
Calmly, she looked at me, grabbed my hand, and said, "You tell stories. Tell him lots and lots of stories. And, he'll remember."

But, what am I, if I'm not psychic, or a medium of some sort? I don't know. I just know I'm not comfortable with either one of those terms. I believe my "super power" comes from God. I don't want to abuse it, and I won't try use it on command. (I couldn't, if I tried. In less wise days, I have tried.) I will only condone its appearance when it shows up unwarranted, and I will always attempt to first try to understand from a Godly perspective why I might have been shown something.

Was God preparing me for some sort of change to come by giving me a glimpse?
Did God want me to extend myself to the person I dreamed about?
Was God trying to comfort me in some way?
Was God trying to tell me something?
Was God so great, he was letting me have closure in a part of my life I'd have not otherwise gotten it?

I try to be all ears, and I try to be open-minded. It's a strange juxtaposition, this trying to be in God's good graces and trying not to be a fortune teller. I'm Johnny Cash, walkin' the line between what I consider holy and unholy, this gift or this curse.

Until next time, sweet dreams.

The Media Bomb

Yesterday, after a day of digesting the tragic bombing which claimed lives and limbs at the Boston Marathon, I posted the following on Facebook:

"I remember when I used to feel as though our government worked hard to prevent terrorist attacks. Either I was young and naive, or our current administration is too busy looking cool and moonlighting on late night talk shows. This is not an anti-Obama statement, but more so a comment on the crap our country prioritizes."

It was a quick rant, not well thought out, and typed out of stubborn ignorance and frustration. But, I'm not apologizing for it. I am allowed to question our president and his administration, and I'm permitted to comment on the temperature of today's politics. I vote and I keep my mind open, but I'm not a fan of Obama, nor his rock 'n roll supporters. And, I don't like when someone of power appears repeatedly on the same late night television talk shows as the likes of Axl Rose and Lindsay Lohan. For me, it sends a message; connecting with the "fans" is more important than doing the work. 

Look, obviously our president works. He works hard. I know this. But, I still. don't. like. presidents. on. David. Letterman. And, I felt safer not seeing presidents so tangible, because it makes me believe they're too busy protecting our country. It's just how I feel.

I do, however, think my Facebook post was a bit too preemptive. In thinking about where my feelings of uncertainty and lack of safety stem, I've come to the conclusion it has much more to do with viral media and technology than it does with the Obamas being on "The View."

See, when I was a tween and there was a war going on in the Persian Gulf, it was nothing more than a rumor. I had no computer home page set to "MSN," nor did I have a smart phone. We didn't have cable, because, back then, one didn't need a bazillion cable channels simply to receive static-free local news channels. And they were just that -- local. The monstrosities that are Fox News, CNN, and MSNBC didn't exist in the capacity they do today.

When I was 16, and if I was lucky enough to be able to sit down to our one desktop computer and dial up some Internet, I had nothing more to do than to type phrases in a Yahoo chat room, or send and receive an e-mail from a friend. It was never more than 15 minutes, either, as my mom often forgot I was online and picked up the phone, severing my connection to the World Wide Web.

There was no iPhone footage of bombings. There was no play-by-play crawler at the bottom of the screen. There were no quick long distance phone calls to multiple friends throughout the country, because long distance cost a grocery bill, and it was seldom used unless it was after peak hours or a weekend.

Nothing beeped, telling me, "There's been a bombing. Several people injured." "Google" was not yet a verb I used to expound upon that beep. News was rumor. What I heard came from my parents, who read about tragedy the day after, in papers, which didn't have pictures from cell phones to publish. Every bit of information traveled more slowly, less graphically, and without the intensity of 30 channels all reporting the same thing from different angles.

So, while I may have felt "safer" back when I was younger, was I? Perhaps it was only my illusion, a naivity allowed to survive because the technology wasn't there to reveal the sordid truth. Maybe, just maybe, my own safety has been the biggest illusion of all.

 

 

Raising Brain

My son, Silas, was born on July 5, 2008, after so many hours of hard labor, I've lost count. This was to be an omen.

I was a typical first time pregnant woman, all aglow with belly pride. I shoved my pregnancy into everybody's face, assuming each individual with whom I came in contact was just as excited as I was about my impending labor and delivery. As far as I was concerned, life -- everybody's life -- revolved around my fetal kick count.

Then, at 6:30 p.m. on my due date, July 3, I felt my first non-Braxton Hicks contraction. I was sweeping up in the kitchen when my in-laws walked through our door with dinner.

"I think it's happening," I told my mother-in-law, as I grasped my boulder of a belly through the clench of another contraction.

For the remainder of the evening, we timed my contractions. They went on, in erratic spurts for unpredictable lengths until 10:40 p.m. At that point, I decided to lay down and try to sleep, as I was not yet in pain enough to prevent rest. My in-laws and husband, being night owls, remained in our home, expecting me to emerge minutes later with more intense labor.

I didn't.

At 1 a.m. in the morning, on the Fourth of July, I woke up to a jolt of pain in my midsection. It felt like I was being painfully stretched, but the pain didn't last more than half a minute. I dozed back off, just to wake at 1:15 ... and then 2 ... and then 2:07, and subsequently throughout the night, but never less than seven minutes from the last time I woke. Each time I awoke, the pain grew exponentially more intense.

The rule of thumb, is usually that a woman doesn't consider going to the hospital before her contractions are five minutes apart and fairly painful. At 7 a.m., I called my doctor, and explained what had been happening.

"Hey, I've been getting contract -- hold on -- mmph, having ... one," I told my doctor, as I grasped the wall in a cold sweat of pain.
"How far apart are they?" she asked.
"Never sooner than seven minutes apar -- grph -- hold ... on," I said. I caught my breath. "They really hurt! That one came quicker!"
"Just keep doing your breathing, and hang in there. When they are consistently five minutes apart, head to the hospital. Please call if you have any questions in the meantime, OK?" my doctor said.

OK. So, I'd wait, then. Laboring at home would be a heck of a lot better than doing it in a hospital bed, anyway. And, I'd already been in labor since 6:30 the previous evening, so I didn't imagine labor would drag on past 6:30 that night. I mean, that would be 24 hours of labor! My mom had shorter labors. I was bound to follow suit, right?

Wrong.

After more than 36 hours of hard labor with most of it spent at "a fingertip dilated," five walks up and down the block with my mother, a morphine shot, an epidural, some cuss words, a lot of tears, and all the Fourth of July fireworks my husband could watch on television, we had a baby. Silas Robert Janosko was born on July 5 at 11:41 a.m., weighing in at 8 pounds, 12 1/2 ounces. I was exhausted, and this was not to be Silas's first late and stubborn arrival in life.

He sat up unassisted at 9 months. He didn't walk until he was 19 months. He cut his first tooth at 15 months, and he wore a corrective helmet after flattening his head from refusing to turn it. Silas wouldn't do a damn thing when he was "supposed" to. But, when it came to talking, I believe he exited the womb exclaiming, "Wow! Check out all this light! It's so nice to meet all of you -- hey, what's that oozing out of Mom? A placenta?! Plahhhhh-sennnn-tahh. Got it. What does it do? Can I touch it?"

By the age of 2, Silas's vocabulary was better than that of the average first-grader. He fell when he ran, and couldn't climb a snail, but he could explain every emotion he felt and the break down causative relationships pertaining to his environment. He could reason and understand abstract concepts, and by the age of 3, (unfortunately through his own life's experiences), he could explain even the idea of death, and express his sadness about it. He also extended himself to strangers. He wanted to know everybody's name, their age, if they had a "woman" or a "man," or a child, or a car, or a job. He also told everybody about our family. His love of how things work grew every day, from trying to understand how germs made him sick, to analyzing the mechanical arm of a garbage truck. Early on, it was clear Silas was not intended for brawn or athleticism, but for intellect, science, and socializing.

When we moved down here, to North Carolina from Michigan, I was pregnant with my second son Asher. And, while the pregnancy was moving along as smoothly as uncomfortable pregnancies can go, my doctor's found I had gestational diabetes, which required twice-a-week monitoring in Asheville -- 40 minutes from where we were currently living. I knew no one, and therefore had to take Silas to every obstetrician appointment and fetal monitoring session. It gave us an opportunity to talk about the pregnancy, and for me to answer every question he had about how labor and delivery worked. Alongside me, he watched my contractions on the monitor, and helped me press the button every time Asher kicked. He also grew accustomed to standing behind a curtain when I received my cervical checks; my Braxton Hicks contractions were showing up so intensely on the monitor, the doctors repeatedly thought I was in labor. It was during one of these cervical checks the doctor told me I was dilated to two centimeters, which was exciting news, considering my lack of progress with Silas's birth. Silas overheard, and understood.

"Is your cervix open? Is the little door opening? Is my brother coming??" I heard from behind the curtain, as my PA, Crystal held him back.
"Yes, buddy. Your brother is coming -- not right away, but he's trying to open the little door to come out," I explained.

As I walked back out into the waiting room to check out with the receptionist, an excited Silas exclaimed throughout the echoing walls, "Mom's cervix is open!" 

After the appointment, we rode to Babies R Us discussing how "cervix" was spelled and why it did not start with an "s." We also discussed how this was not something to blurt out in the waiting room, nor in public. So, when we got to Babies R Us, and Silas found a woman shopping for Boppys, he tugged on my shirt and quietly whispered, "Mom? Can I tell her about the cervix and that it's opening?" (I did not let him.)

Since that day, Silas has mastered the understanding of a few more concepts I'd not have expected. He owns approximately three adult books on sea creatures and oceans, and can successfully identify more than 50 species of sea life. He can tell me their diets, their tendencies and their habits. He knows more "Star Wars" lore than the average adult geek, but he also understands Darth Vader's internal struggles as a bad guy with good still remaining in his damaged heart. He'd prefer to count backward, in negative numbers than forward -- in the ways his teachers would prefer. He is a salmon, constantly swimming against the current. His creativity and ability to problem solve or find a way to do what he wants is beyond me, as well. He is the most resourceful 4 1/2 year old I know. Two weeks ago, when we first closed on our new home, (a foreclosure we're renovating), I took Silas over to the house without toys. When he asked what he could play with, I handed him a paint tray, some paper cups, and a whole bunch of blue painter's tape.

"Here," I said, "Figure out something to do with all of this." 

Thirty minutes later, he came back to me with a ship he'd built, using the paint tray as a base, the cups as symmetrical engines, and a whole bunch of paper towels he'd collected as other ship components. 

Does he count to 100? No. Does he write all his letters correctly? Absolutely not. Can he draw better than the average child. Uh-uh. Can he read? Nope. But, Silas cannot do these things because he won't. He's stubborn. And, this scares me.

When one raises a strong-willed brain, one must bear in mind her child is smart. Silas can manipulate, fake and instigate. It is for this reason, I will have to be an especially alert parent. He could go one of many ways; he could get bored in school, refuse to even try, and put his efforts into dangerous activities. Or, he'll have a mom and a dad who hold him accountable for pretending to be stupid. Or, he may be a self-starter and do just fine. We shall see.

As we embark upon the end of pre-school and the beginning of kindergarten, I'm watching him like a hawk and taking in all the advice and counsel of parents of other stubborn brainiacs. I have a handful of other moms who are good at providing me with tips from their own experiences, and thank God for them, because I have no idea what I'm doing. 

For now, I have at least enrolled him in tee-ball to teach him the values of teamwork and listening to others. You may judge for yourself how that is going. He's the one facing backward in the number 55 jersey.

Introducing 'The Securely Insecure Mama'

I'm not sure how many "mom" bloggers there are nowadays, but I have a feeling it's some number in the range of "anyone-can-start-a-blog-so-anyone-does-and-what's-the-point-of-me-starting-one-too." (That's a number, right?)

I guess what I'm trying to convey, is that I feel pretty "meh" about my own writing these days. It seems there is always a better writer, a better mom, a more Pinteresty woman, a more physically fit woman, a more do-it-herself woman, a more powerful woman, a more secure woman, a more freakin' woman-woman. I mean, where can I possibly fall into this? And, other than me feeling a warped need to vent my own overwhelmingly intense feelings and indiscretions, who on Earth needs to hear them?

But, here's the thing; there are a few things I rock at, and the top one is, I'm a good motivator. I learned that years ago, back when I realized just how bad I was at being a performing musician (guitarist/vocalist). I'd get on a stage and forget chords, melodies, words to songs, (etc.). I'm not scared of being on a stage, it's just that I get distracted by a bartender's shiny bangle bracelets, or I end up making awkward eye contact with a drunk older gentleman who I just realized looks like a combination of Spongebob Squarepants and my old next door neighbor, who I loved, and who passed away a few years ago. I mean no offense to either, it's just that I find myself in the middle of an Indigo Girls song I've sung and strummed a thousand times, when all of a sudden I'm trying to reconcile how a cartoon character and a good, yet deceased friend can possibly have anything in common with an intoxicated bald man. These are the reasons I forget lyrics, because I'm afraid that while I'm supposed to be singing, "Closer to Fine," I'm going to end up singing something like, Closer to Pine ... apple under the sea!" It has happened. I have sung some weird-o shit on accident.

So, I gave up on performing a while ago, and instead decided to learn from other performing musicians by listening intently to vocal inflections, watching the hands of a long-time guitarist and how he muted or rang out every chord he played, listening to rhythms, watching body language, observing how every hand of every stringed instrument strummed, slapped, and picked. I've witnessed more than I could possibly ever even yearn to play, and with this, I decided to teach guitar. There's a reason "those who can't do, teach." It's because teaching is an art, and the "can't" is actually a "won't." Could I have been a great performer and trained myself not to get distracted? Sure. Did I desire to? No. I desired to do something that came more naturally, as I am a person of convenience.

Anyway, it wasn't more than a year into teaching guitar that I had a waiting list. My load of students grew quickly, as I was one of the only female guitar teachers in the Detroit, Michigan suburb in which I lived. I related to the angst of my teenage girl clientele. I, too, had struggled with many issues pertaining to my own insecurities in high school. I was only 22 when I started teaching; I was not so far removed from teen-dom that I couldn't remember the pain of breakups, shallow friendships, negotiating with strict parents, and peer pressure. That gave me the gift of passion and sensitivity, and in turn, made mothers of teenage girls flock to me as their "girl guru." Not only did I provide girls with a confidant and a sounding board, but I provided many parents with security, as I had crossed the gap into adulthood, into a time of life at which I'd come to realize, that, hey, my mother had been right about most of what she said. I was a mediator between mothers and daughters, a guitar teacher, and a mentor, and I did these things successfully, even during the times my own life would periodically fall apart. 

Like I said, I am a good motivator when I want to be. And, it's for this reason, I am going to try my hardest to keep up with a blog. My writing is rusty, but it will get better. It's a muscle I need to exercise, and I'm barely into a one-mile saunter at this point. It will improve. (Read that last word? "Improve." I'm so, totally washed up at this point that I literally had to pause for a full minute to think of a synonym for "get better." Wow. We have a way to go, here.)

I will write it how it is. (Could you see me literally snap my fingers in a z-formation, there?) Yeah, I know that's a trend right now. But, in all seriousness, I think I'm better than the average "truth writer," as I am open about myself across the board -- not just with one subject. Carrie Fischer, for example, has been open about being bipolar. Brook Shields allowed the public to read about her post-partum depression struggles. Michael J. Fox lives his Parkinson's life in the public eye. While I commend anyone for sharing any part of themselves in hopes to help others, I don't compartmentalize my transparency into one or two particular facets of my life.

I will talk openly about my need to be on Zoloft, and how I'm a fearful, reactive, sometimes angry, and obsessive person when I'm not on it. I'll talk about my strong opinions on researching vaccinations. I will discuss evvvvvery single body issue I have after having two children, along with my continual fear of wearing shorts and exposing my thighs and cankles. I will talk about nursing my baby and my disgust of hairyolas, (They're hairy areolas, and no, it's not something from which I suffer, but it was something discussed with a waiter at dinner tonight.) I will talk about my insecurities, even if they seem shallow and vain. I will talk about my faith in God, and how I continually run away from Jesus just to find myself being dragged back by the ear like a stubborn child. I will talk about my own battles with post-partum depression. Nothing is off topic.

Here's what I need my audience to know:

• My husband's life is his own private life, and I respect that. I will write about my perspective in my relationship from time to time, but here's what you ultimately need to know: I love the man, and I'm happy.
• My sons, particularly my eldest, are growing and I will protect their childhood and private lives.
• I was raised by good, honest, hard-working people. They raised four children to become not only contributing members of society, but also good adults who make this world better.

Well, with that being said, I think it's time to sign off. My bed is beckoning, and the morning always shows up like a Jehovah's Witness knocking at the door. 

Until next time,
The Two-Baby Body