THE UNSPOKEN GOALS

 
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My trainer Dave and I have an agreement to not talk about ADLs.

“Too clinical” I say,

“Let’s do workouts for skiing or riding instead, they’re more fun.”

ADL, or Activity of Daily Living, is an important goal for physical and occupational therapists to help folks regain everyday functions like balancing, reaching, standing, walking, showering, or going to the bathroom; to name just a few things that most people do mindlessly, many times throughout the day.

My stroke in 2005 left me with quadriparesis, or weakness in all 4 limbs. I have sensation in both feet and hands and can stand if I have something to pull on and hold. My legs are strong but hard to move when all the muscles fire at once – a phenomenon we call muscle “tone” or “toning.” To quiet the tone, I have a titanium, hockey-puck-sized, pump implanted under my skin that feeds a muscle relaxant directly into my spinal fluid. My toes are gripped most of the day, especially when I stand (Die Hard parlance – “make fists with your toes”). The muscles on the inside of the right calf want to contract, pulling the foot to an almost 90 degree angle, further complicating the act of standing. I wear a below-the-knee-to-tip-of-my-toes brace to alleviate that (and a size 12 6E shoe to accommodate the brace).

My left hand is closed, if not clenched, fingernails digging into my palm, most of the day. Lefty (my left arm/fist unit) generally rests in a guarded position on my lap. The right hand is the “good” one – the index and middle fingers and the thumb work, but the other 2 fingers prefer to stay bent. I can lift the right elbow about 6 inches without too much effort. Yvonne must help me roll over and help make any adjustments during the night, and get in and out of bed, as well as help me shower (see my 3/4/15 blog).

I don’t complain because it’s a lot better than the alternative: fewer than 10 percent of the people that have brain-stem strokes survive them, and very few of those survivors are candidates for rehab.

Each day I am thankful for the mobility and intellectual acuity that I have maintained, and each day I begin my decathlon of ADLs in the same way: sitting on the side of the bed, eating breakfast, and reading the paper. Rather than casually sipping coffee, munching on Yvonne’s homemade granola, and perusing the news all at once, each individual movement requires concentration and balance.

To reach for the bowl of granola I must stretch my right arm and get my two good fingers and thumb to hold the spoon. Then I stretch my right arm to put the spoon back. Meanwhile, Lefty sits on the corner of the newspaper waiting for Righty to slowly sort through the pages, clench the desired page, and then stretch and turn to the chosen section. This action is more challenging than eating because the paper refuses to fold without several tries. Then I can turn my attention to the coffee. The right arm stretches out; two fingers clasp the handle, and slowly move the cup to my mouth. Each sip of coffee tests my balance as my body wants to fall to the left when my right arm folds up from my side.

Sometimes I tip over, back onto the bed, prompting the call for help “The piper is down!” as Yvonne rushes back in to right me.

From the bed it’s a coordinated (or sometimes not) dance/transfer with Yvonne into my wheelchair before heading to the bathroom. Two transfers later – on and off the pot – I’m at the sink shaving, brushing my teeth, and taking my daily meds. This all requires reaching – to the faucet, tooth brush and paste, and hair brush. Again, mindless, thoughtless, effortless movements for most, but when I can’t lift my elbow above the shoulder and when reaching causes my body to stubbornly extend in the exact opposite direction, this part of my decathlon also requires focus, patience, and frequently a few Mulligans.

So each Thursday when Dave puts me through the paces of pull-ups, planks, squats, reaching while standing, and balancing on my knees (“knee chi”), we agree that it’s to help with that week’s ski or riding lesson, but we know that it’s really about the daily ADL decathlon.

Sure, the planks help my core strength and the squats help me post in the stirrups, while the simulated ski movements help me with my reach and turns on the mountain.

But we both know that it is the incrementally easier transfers and reach to the light switch each morning that really make me smile and push me through another set of simulated turns or rides.

 
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