Parkinson’s has changed the way I hold my body in more than one way. At one point I developed a severe sideways lean that I was told was Pisa syndrome. Later, a forward stoop became more noticeable. These have not been the same experience, and my posture has also changed over time.
You might recognize it as: leaning to one side, bending forward, rounded or stooped posture, constantly looking for something to lean against, or realizing that you are no longer standing as upright as you thought you were.
What This Feels Like to Me
During the worst period of my sideways lean, standing without support could become painful within minutes. I found myself automatically looking for a tree, a grocery cart, a chair, a railing, or almost anything else I could lean against. Later, my posture became more of a forward stoop. Today I can straighten myself fairly easily when I notice it, but I tend to drift back into that position.
It used to feel like my body was pulling me into the stoop. Today it feels more like I drift into it.
What I Wish Other People Understood
Sometimes what looked like shifting around, sitting when everyone else was standing, or searching for somewhere to lean was really me trying to manage pain and stay upright. There were conversations when I was not having trouble paying attention to the person in front of me—I was having trouble paying attention to anything except finding somewhere to lean.
Using a cane later made some of that need easier for other people to recognize. The cane didn’t create the need for help. It made the need visible.
My Experiences With Postural Changes
I Was Always Looking for Something to Lean Against
My firsthand Experience with severe lateral leaning, pain, searching for support everywhere I went, and the later changes in the way I hold my body.
Related Treatments & Devices
My posture has changed across different stages of Parkinson’s, but I have not been able to attribute those changes to one particular treatment. As PD Through My Eyes grows, this section will connect to firsthand treatment and device Experiences when there is a meaningful connection I can personally describe.
Learn More About Postural Changes in Parkinson’s
PD Through My Eyes is about my lived experience, not medical expertise. Postural changes can have different causes, and a new change should not automatically be assumed to be Parkinson’s. For medical information about posture and Parkinson’s, visit the Parkinson’s Foundation — Stooped Posture or discuss new or changing symptoms with an appropriate healthcare professional.