For a period of my life with Parkinson’s, standing still could be harder than walking.
It wasn’t simply that I preferred to sit down. Standing could become painful enough that I was constantly looking around for something I could lean against.
My Body Started Leaning to One Side
My recollection is that around late 2017, I developed a severe sideways lean in my upper body. I later learned the term Pisa syndrome.
My legs and lower body could look relatively normal, but my upper body leaned noticeably to one side. It also caused significant back pain.
I don’t remember exactly how long the severe leaning lasted. Eventually it improved, and I can’t point to one treatment or change that clearly explains why. I have also been diagnosed with scoliosis at some point, but I don’t know what relationship, if any, that had to the leaning I experienced.
I Was Always Looking for Support
During the worst period, I could only stand unsupported for a short time before the discomfort became too much. In my memory, it may have been something like three minutes, but I wasn’t timing it.
So I adapted.
If I was outside, I might lean against a tree or a picnic table. At the grocery store, the shopping cart gave me something to hold onto. At an airport, I might find one of the stanchions used to form the lines.
Wherever I went, part of me was looking for the next place I could get some support.
Even Church Required Planning
Church was one of the places where this became especially noticeable to me.
There were times when everyone else would be standing to sing and I would have to sit down because I couldn’t continue standing comfortably.
I also learned that where I sat mattered. I didn’t like sitting in the front row because there wasn’t a chair in front of me to hold onto when I needed support.
Walking into an unfamiliar place could mean immediately surveying the room:
Where am I going to stand?
What can I lean against?
Where can I sit if I need to?
Sometimes the standing involved in an activity affected whether I went at all, how long I stayed, or whether I left early.
Sometimes I Wasn’t Ignoring You
One of the things people couldn’t necessarily see was what happened when I got caught standing somewhere without anything nearby to support me.
I might be talking with someone while shifting my weight, trying to hide how uncomfortable I was becoming.
Meanwhile, my attention was moving away from the conversation and toward one thought:
I need to find somewhere to lean.
Sometimes I wasn’t having trouble paying attention to you. I was having trouble paying attention to anything except finding somewhere to lean.
At the time, I don’t remember thinking about this in terms of losing independence. It was more practical than that. Parkinson’s had created another problem, so I found another way to adapt.
Then the Lean Changed
By around 2020, another postural change became more noticeable: instead of the dramatic sideways lean, I increasingly noticed myself stooping forward.
Sometimes I didn’t realize I was doing it until I saw myself in a mirror or someone pointed it out. My wife noticed it too.
Years ago, especially when my Parkinson’s symptoms were worse, I sometimes felt almost as though my body was pulling me into that forward position.
Today it is different.
I can usually straighten my shoulders without much trouble. But if I’m not thinking about it, over time I can drift forward again.
It used to feel like my body was pulling me into the stoop. Today it feels more like I drift into it.
The Pain Was the Hardest Part
For me, the hardest part of the severe postural problems wasn’t how they looked.
It was the pain.
During the worst period of the sideways leaning, I even went to a chiropractor looking for help. My recollection is that I was told the problem was related to Parkinson’s and that I needed to talk with my neurologist.
I also noticed something strange when lying flat on a hard surface. At first, it could be excruciating. It might take several minutes before my body seemed to settle into that position.
Then it could actually feel good.
The best way I can describe the sensation is that it felt as though I was stretching my body out of the bent position it had become accustomed to. That’s just how it felt to me, not a medical explanation of what was happening.
The pain wasn’t constant, and every time I stooped forward didn’t mean I was in pain. But when the postural problems were severe, pain was what affected me most.
Posture Could Affect My Walking Too
I’ve also noticed that when I become significantly stooped, my walking can change.
My steps may become shorter. Sometimes I may shuffle more, although that doesn’t happen every time.
That’s one of the things I’ve learned about Parkinson’s: symptoms don’t always stay neatly separated from one another. Something that starts with posture can change the way the rest of an activity feels to me.
What Other People See
Posture can change how you appear to other people too.
When I’m stooped over, I sometimes think I look much older than I am—almost like someone looking at me might see an elderly man rather than the person I see myself as.
I don’t remember strangers making comments about it. Most of that awareness came from me and from people close enough to notice changes over time.
Being told to “straighten up” wasn’t particularly helpful. Usually it just made me more conscious of something I was already dealing with.
The Cane Made the Need Visible
Over roughly the last couple of years, I’ve used a cane.
One thing I’ve noticed is that people are more likely to recognize that I may need a seat or some help when they can see the cane.
The need for support wasn’t necessarily new.
It was simply more visible.
The cane didn’t create the need for help. It made the need visible.
What I Wish I Had Known
One thing I’ve learned over the years is that Parkinson’s can affect far more than the symptoms people commonly associate with it.
Earlier in my Parkinson’s journey, when something new happened to my body, I didn’t automatically connect it to Parkinson’s. I might go looking for an explanation somewhere else, only to eventually hear that Parkinson’s could be involved.
Today I probably lean too far in the opposite direction and wonder whether almost every new problem is Parkinson’s.
Neither assumption is something I would recommend to somebody else. A new symptom deserves appropriate medical attention rather than simply assuming Parkinson’s is—or isn’t—the cause.
What I do wish I had known is simply that posture can change with Parkinson’s.
I can’t look at someone else’s posture and tell them what is causing it. I can’t tell them what treatment will fix it.
I can only tell them what happened to me.
For a while, Parkinson’s changed the way I stood so much that I entered rooms looking for walls, chairs, trees, carts—anything that could give my body a little relief.
Most people probably never knew I was doing it.
But I did.
Because for a period of my life, one of the first questions I asked when I entered a place wasn’t where I wanted to go.
It was:
What can I lean against?
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