With Parkinson’s, one of my crucial needs is to find my spot
Sitting — where, how, and at what height — is not a casual decision for me
One of the most unhelpful things you can say to a Parkinson’s disease patient is, “Just relax and get comfortable.” For me, and many of my fellow Parkinson’s warriors, the idea of relaxing and being comfortable is a ship that sailed long ago.
I’m almost always experiencing some level of rigidity, which causes all of my muscles to tense up to the point where I have to stop and focus on relaxing them one by one. I can be actively thinking “Relax your shoulders” and realize that while I was saying that in my head, my shoulders have snuck right up into my ears again. As I often say, relaxing is hard work!
My movements are frequently made awkward by bradykinesia, or slowness of movement. Balance issues, along with a more limited range of motion, often make getting up and down from certain chairs and couches a problem.
Self-care in my seats
As a result, at places where I spend time frequently — friends’ and relatives’ houses, doctor’s offices, and even in my own home — I have designated “spots” where, over time, I’ve found I can perch myself and be a part of the activity, but not worry about needing help getting up, or making too much of a fool of myself in an attempt to climb on top of an uncomfortable bar stool, for example. And I’m almost always hot, so a place near an air-conditioning vent is also key.
We recently bought a new bed, and believe me, the tape measures came out. Before spending any money, I wanted to be sure it was high enough that I could sit on the edge easily to take my morning medication and stay seated while I got dressed. But the bed also had to be low enough that I didn’t have to climb up into it.
Anyone who watched the TV show “The Big Bang Theory” will recall one of the main characters, the quirky but brilliant Sheldon, and his spot. It was a particular seat on his couch where he had to sit, no matter what. He loves his spot because:
“In the winter, the seat is close enough to the radiator so that he’s warm, yet not so close that he sweats. In the summer, it’s directly in the path of a cross-breeze created by opening windows there and there. It faces the television at an angle that isn’t direct, so he can still talk to everybody, yet not so wide that the picture looks distorted.”
That laundry list of characteristics of the perfect spot sums up how I feel about my spots in my home and at others’ houses. I have very specific needs when it comes to a spot.
I may be drawn to my particular spots for different reasons, but like Sheldon, everyone in my life knows that you don’t take my spot! I’ve overheard close friends shooing people away from my seat once I’ve commandeered it for the day. I’m fortunate that they say it with love, and it’s kind of a running joke. But it’s also true that they respect all of these Parkinson’s disease quirks I’ve developed and make it easier for me to spend time with them.
Some of our closest friends recently got a new couch. When I first saw it, my first words weren’t about how nice it looked — it did — but instead I blurted out, “You bought it without asking me?”
Fortunately, I’ve found a new spot on their new couch, so we don’t have to stop being friends. Tolerating my need for a spot is just another sign of how much difference it can make when you let your friends in on your needs and let them help you.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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