In the cool autumn afternoon there is the sound of shuffling steps, crunching leaves, the rhythmic drag of a rake, then the rustle of a tarp being laid out. The rake propels leaves onto the tarp, the corners are gathered and the tarp is lifted toward a shoulder. In mid hoist, a dyskinetic impulse strikes – tossing the leaves skyward. There’s a mighty expletive! And, the swirling foliage wafts down in my hair, beard and hunched shoulders – such is Fall with Parkinson’s disease.
On the plus side, in the Fall season the shuffling gait and falls are easy to explain away. What? I like shuffling through the leaves! I wanted to flop in this big pile I raked up! Gee, lighten up! It’s fun acting like a Kid again!
When getting a cup of coffee, I’m used to (well, kind of) the arm shooting forward at times like I’m going to toss the cup. I say ‘kind of’ because, to tell the truth, I never know if I’m really going to toss it or hang on to it. In fact, it’s gotten to the point that it’s not a good idea to be around me when I’m holding something in my hands. I guess you never really “get used to it”, we just kinda live with it. Sometimes, I use my pills for confetti. I open the bottle carefully, place the cap down, and my arm jerks up and out – presto a couple hundred pills perform a mass escape.
My experiences so far did not prepare me for this…
The alarm went off as usual (first alarm clock, I need two!) I reach over and take my first dose of carba/L- dopa. The phone rings. It is the young angel, My P.C.A. to remind me that she is going to be late this morning. Ah, I don’t need to hurry. I turn on the Weather Channel to catch the forecast. I reach for my lighter – thinking I’ll lay back and have a smoke before I get up. In my clumsiness I knock the lighter off the headboard and it slips between the mattress, box springs and headboard. Without a second thought, I plunge my arm after it.
Well, you know the feeling of doing something and then a split second later knowing it was NOT something you should have done? I found myself caught by my suddenly cannibalistic bed! Too tight to pull my elbow back. Belly down, squirming like a fish!
Well, I thought to myself, Anne (my PCA) will be here soon. No, that’s right she’s going to be late!
Can’t reach the phone. Can’t reach the rest of my morning meds.
My sister calls daily to check up on me. But that’s not till around 9 p.m.
While all this is going through my mind, I try pushing on the headboard in order to move the bed. The casters have settled deep into the plush carpet + plus my weight = no way!
I thought that maybe if I can somehow get my feet over the edge I would relieve the weight bearing down on the bed. So I squirm and wiggle my legs to the edge. I tell myself “There if I just can lower my feet enough…what’s this?” My dog is lying there! He gets up and goes into the other room to sulk.
“OK, now my big toe touches the carpet, that’s as far as it can go! Now what?” I mumble to myself. “I really don’t want to greet my PCA with a full moon.” Did I mention I’m in my birthday suit?
“Wait a minute…maybe just mattress will move…” I think. The effort pays off, it gives a little and my arm comes free. Success! Now, I have to remember to hide my cameras, denial is much more creditable with out photographic evidence!
Such is life with Parkinsons. We never know which seemingly benign item will suddenly turn on us, attack or entertain itself at our expense.
Caregivers, if you have to go out for an extended time or to work – have a friend pop in to check on your Parkie. We’re probably just fine but, then again…
I never thought my bed would try to eat me!
You gotta laugh, it beats crying and they say it’s the best medicine!
Editor’s Note: Al corresponded on our Forum, using the screen name LOHENGR1N. He was diagnosed with Parkinsons in 1986.
Al was a Parkinson’s patient from Massachusetts. A divorced, father of three and Grandfather of four, he lived with his Service Dog in the Berkshire Mountains in the far western end of the State. Al was a welder before Parkinson’s changed his life. During his battle with Parkinson’s, he strove to educate people, the State legislature, medical field personnel, and general public about Parkinson’s Disease and it’s effects upon patient, family and loved ones. To that end, Al has served as the State and Congressional coordinator for Parkinsons Action Network in Massachusetts. Mr. Alan Stanley Labendz, 67, of Adams, died on Friday, March 27, 2020, at his home.