It really bugs me. It gets under my skin. It’s a certain feeling that I get with my Parkinson’s that I am consistently unable to explain in any coherent way. I’d describe it as feeling like being on edge – somewhat shaky and feeling this chaotic parade of bugs swarming below the skin’s surface of my legs and arms. It is episodic but maddenly perseverant. For someone trying to get a sense of what my life is like living with PD, getting this would be a good start! Yet, what I experience as an individual with PD can vary so much from other persons with Parkinson’s (PWP). There’s an expression I’ve heard that goes something like “If you’ve met one person with PD, then you’ve met one person with PD”(implying everyone ‘s experiences or needs are unique to them). PD is brutally intimate in that regard! Still, we all experience some common symptoms to some degree – stiffness and rigidity, slower movements, some cognitive change as examples. So, how does it feel to have PD? I recently read in a fellow blogger’s site (Parking Suns by Bruce Ballard) about a conversation between some PWP about how one might best answer this kind of question through simulation. Here are some of the activities they suggested for people wanting to get a sense of what having PD feels like.
- wear a leg weight on one leg.
- on the same leg, also wear a slipper that is a few sizes too big. This will help you to “drag a leg/foot.”
- every two hours take a break and find a bathroom. Quickly, within one minute. This is what bladder urgency is like
- when you wake up in the morning, walk backwards for the first 45 minutes until your meds kick in.
- when the phone rings, simulate a freezing spell. Don’t pick up your feet to answer it; instead, drop to your hands and knees to try to crawl to the phone in time.
- do not carry a glass filled with liquid because your tremor will make you spill it. Alternatively, try to drink from a full martini glass as a friend gently shakes your arm.
- get a leather belt and a cheap serrated plastic knife like you’d use on a picnic. Try cutting the belt with the knife. This will simulate cutting meat.
- hold a cell phone in your “affected hand” while a friend gently shakes your arm as you listen and speak to the person you’re calling.
- hold a cell phone and try typing a text message with your lame hand while a friend gently shakes your arm.
- to experience dyskinesia, move your torso right and left for 15 minutes without stopping.
- on one hand wear a thick rubber glove like you’d use for washing dishes. Try picking out 85 cents from a handful of change. Then try to remove your driver’s license and/or credit card from your wallet.
- try to type or text while wearing the same thick rubber glove.
- if you’re right handed, unload the dishwasher with just your left hand while your right arm hangs listlessly by your side. (If you’re left handed, unload with your right.)
- if you’re right handed and use a computer mouse, move the mouse to the left side of the computer and manipulate it with your left hand.
- one i often complain about is the Parkinson’s facial mask makes my face look like it’s made of stone – cold, unemotional. My body gets more heavy and stiff like stone. Get a big bolder for your lap. Couple of rocks for your shoulders. Some stones for your legs. Heavy, dense, crushing stones. Not a rolling stone.
How does it feel?!