Get Out and Keep Going
I lost both my legs above the knee and my right arm at my shoulder thirty-seven years ago. Within days of the accident, we were bundled in bandages and hospital gowns, sitting in the courtyard of the Salzburg Trauma Hospital, breathing the grass-scented air and soaking up the late summer sunshine—better medicine than pills or shots. And, it was free.
Getting out-and-about has been a passion of ours, spending more time outdoors than most able-bodied families. Our daughter made her first pilgrimage to the ocean when she was five days old. Dave packed his new family down the hill to the beach with my left arm hooked around his neck, his right arm cradled under my butt, and Tiffany asleep in her bassinet swinging from his left arm. My post-partum, bathing suited, legless figure made an odd picture sitting on the beach towel, but we didn’t care how it looked to other people. It set the stage for decades of family adventures…just get out and have a good time.
When at age sixty-five, my doctor told me, “I think you have Parkinson’s Disease”, I already knew a thing or two about doing things, in spite of physical disability, and looking funny when doing fun things. My first reaction was, Shit. Dave doesn’t need this on top of me being a triple amputee. But then I realized, Good thing it’s me and not him. We need one able-bodied person between us, so we can get out and keep going.
We knew there’d be new challenges, both physical and mental. What caught me off guard was the non-motor symptoms of this nasty disease.
My pre-diagnosis symptoms were sneaky. Little things—like getting my fingers to button my blouse or to fold and hang the towel after my bath in the morning—were strangely difficult to do. Writing was like pushing my pen through molasses.
The worst thing about these activities was that that using my hand and fingers made me anxious. Within seconds, I’d feel a dull, achy sensation enveloping my whole body, accompanied by an urge to hyperventilate. It was a crappy feeling that I didn’t know how to subdue. I’d never really experienced the heavy, sometimes shaky overall sense of anxiety, so it was a shock when I finally put two and two together.
This was a new dragon to slay. I found myself using new words to describe my feelings—apathy, anxiety, subdued, lethargic, flat. It was tempting to think I was just discouraged but when I took an additional Sinemet pill, I found the heaviness lifting, confirmation that this was the disease, not just my attitude toward it. As I became a better-informed patient, I found that in addition to my prescribed meds, exercise and lifestyle choices could positively impact these non-motor symptoms.
My husband, Dave, has been my enabler all these years. But now, I realize that he may become my caregiver as well. Wondering what I can do to keep his life fun and rewarding weighs on me. I know he revels in fresh air, as evidenced by the 75,000 plus miles he’s run since we’ve been together. Another reason for me to partake of sunshine and fresh air. Medicine we can share. Our free drug.
Just another day on another trip. Except it was raining. Not just dribs and drabs. The sky was in the process of dumping ten inches of rain in 48 hours in Lake Moreaki, New Zealand. Somehow the word “Rainforest” went right past me when I read the description of this trip. This was a rainflood in the rainforest! The nearby river was too high for the kayaking trip we’d planned. But water wasn’t going to stop my fearless husband from getting me into the dense primeval forest, all the way to the swinging footbridge.
“Hey, hon,” he said with an impish smile on his face. “I asked the owner if he has a wheelbarrow and he’s going to have someone leave it outside our room.” Sure enough, the next time we opened the door, it was there, a rusty, paint-splattered, well-used wheelbarrow, with an old quilt folded on the bottom. I giggled when I saw it—what a nice gesture. We bundled up and Dave carried me outside, my left arm around his neck, his arms cradled under my butt. My chariot swayed precariously as I plopped down in it. Off we went into the primordial forest with ferns, lichen, vines…all dripping from the deluge. I expected a dinosaur to peak out from the dense vegetation.
“Yikes”, I shriek as the fat front tire wobbles onto the narrow wood planks of the bridge. “Where are you going?” He can’t hear me over the roar of the rapids below us. Adrenaline surges as I grasp the edge of the wheelbarrow and squeeze my eyes shut so I can’t see the whitewater below. I take deep breaths. Lots of rain-cleansed, fresh air…I must be the luckiest person in the world. Let’s keep getting out and having a good time.
Linda Olson, MD, was a presenter at the WPC 2016 in our special presentation on “Living Well with Parkinson’s.” She is a retired radiology professor from the University of California San Diego.
Ideas and opinions expressed in this post reflect that of the author solely. They do not reflect the opinions or positions of the World Parkinson Coalition®.