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(Digital Vision/Getty Images/Digital Vision)

I'm raising kids and managing Parkinson's Add to ...

There are a number of certainties when it comes to the weekends I spend with my daughters. Here’s one: Eggs will be broken. Pancakes, scrambled eggs, omelettes. It's a sure bet. Eggs will be broken.

I marvel that both my daughters, ages 8 and 6, have mastered this little trick: a gentle tap to form the crack, now get the thumb tips in there just so and … open. The egg contents plop into the mixing bowl. With no shell bits.

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I remember when I could do that.

It's been 10 years since I was diagnosed with Parkinson’s disease. In the summer of 2001, I was 34 years old, well into my teaching career, one year into my marriage and ready to start raising a family.

The key coping strategy during those years was denial. Acceptance – an attempt to understand what was going on, and to adapt – was not part of our world. The marriage ended in 2007.

Denial is like an eggshell: For such a thin veneer, it is a remarkably tricky habit to break. There are days, even now, when I fall back into it. Acceptance, I have learned, is not a destination. There is no prize at the finish line, no enlightenment to be achieved. Acceptance is something I have to renegotiate every day.

Before my diagnosis, I had a limited understanding of Parkinson’s. I pictured an elderly person, stooped and shaky. I had only a vague awareness that people in their 30s and 40s, such as Michael J. Fox, could be afflicted with it.

I had been troubled by slowness and stiffness in my left side for about a year. A battery of physical examinations and brain scans had gradually ruled out other scenarios, so I had a pretty good idea of what my neurologist was going to tell me that day. Still, it shook me to hear it: “young onset Parkinson’s disease.” I remember looking out his window to one of the hospital parking lots and asking, “What happens now?”

That is the question I have learned to ask myself every day. My renegotiation starts the moment I wake up: What happens now?

First things first: I have to get out of bed. Wake up – I send the message to my body. If my 4 a.m. dose of medication has kicked in, eventually something will respond. I have a pretty stubborn tremor on my left side in the morning, so one option is to literally shake the top sheet off me. Then I can engage some core muscles to swing my body around and let gravity do the rest.

If my daughters are with me, it’s possible one of them will wake up first. Sometimes my eldest, May, will crawl into bed beside me and respond to the tremor in my left hand by setting her own hand shaking. Then she watches my eyes open. “Daddy?”

Leigh has a different approach. After a few seconds of watching me shake, she will simply wrap her hands around mine, then pull. That's how she breaks the eggshell. “Daddy!”

Daddy, they are saying, get up. You have to eat something so your stomach isn’t empty, then you can take your pills. Get up, Daddy, we’ve got things to do.

One of the side effects of the main drug I take for Parkinson's is the development of distinct “on-off” cycles. I swing through about five of them in my waking hours. That means I have about five hours of relatively good motor functioning. The rest of the day I'm either “wearing off” or just plain “off.” The girls can recognize it in my face now. That’s where it starts. My eyes go blank and my jaw pulls back.

“The muscles in my face get really stiff,” I try to explain.

“You mean like when the dentist gives you a needle?” they ask.

“Not exactly – my mouth doesn't go to sleep. It gets pulled in, and all sticky inside. Then the stickiness spreads to my neck and shoulders down to my hands. Then all the way to my feet. Everything slows down.”

“That’s why you aren't allowed to drive any more, right?”

“Right.”

It’s not always this straightforward for them, or for me. It can be frustrating when something I was able to do an hour ago – helping with a stuck zipper, for example – now eludes me. At some point, frustrations will come to a head and someone will lose their cool.

I remember well a Saturday two winters ago when we all lost it together. It had been snowing all morning, and the girls were anxious to get out and play.

“C’mon daddy!” May was already suited up and at the front door.

“Hold on!” Leigh and I were having quite a struggle with her snow boots. My meds hadn't kicked in yet, so my fingers were useless to guide her feet into the boots. She was getting hot in her snowsuit and losing focus.

“Ugh,” she muttered from the floor.

“Dad-dee-uh,” May called from the front door.

“Just wait a sec.” Sweat started to drip down my chest. “Get in there,” I said. I was pushing the boot with both hands now, almost blindly. In denial. “C’mon foot!”

“Ow!” from the floor.

“Dad-dy!” from the front door.

“Hey!” I bellowed, throwing the boot to the floor. Then this tumbled out of my mouth: “I’m trying to get the foot in, dude!”

We stared at each other for a few seconds, dumbfounded. A question hung in the room. What happens now?

Then the three of us erupted into fits of laughter.

It was like an egg had been broken.



Ross Breithaupt lives in Hamilton.

 

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