“Run Parkie, run!”

The “internal feedback system” of people with Parkinson’s does not function properly. I have no idea what the neuroscientific explanation is but I think that our body awareness is seriously flawed. We simply don’t know where we have our arms and legs or how we use them, that is why we walk in a strange way and hold our bodies in uncomfortable positions. I know it is difficult to believe or understand but it is like our bodies’ internal mirror is broken.

This means that it is a challenge for me to correct my posture and adjust my gait, even with the help of an actual mirror. It is as if the effort it takes to just hold my rigid body upright with muscles not able to work at the proper speed, makes it impossible for my brain to process the information from the mirror about my posture at the same time. Strangely enough, I am very good at observing how other people move their bodies and spotting unnatural patterns.

Luckily enough, there is a solution to this: external feedback using filming. When I see a film of myself walking, especially with someone pointing out what is wrong, I can see it myself and try to correct it. These last few days at the neurological rehabilitation centre in Portugal (see previous posts here and here), have been truly eye-opening and full of “aha moments” of huge importance. I have literally found muscles that I had no idea I had every day and I can feel that in my body this morning of the fifth day of training.

Every day has been a breakthrough in body awareness and yesterday was no exception. Our wonderful physiotherapist Josefa had put us on treadmills and Jon, the grumpy but brilliant neuroscientist with Parkinson’s, and I were walking like it was the easiest thing in the world. And to complicate things a bit, Josefa had strapped strong rubber bands around my ankles, pulling my feet back forcing me to be more aware of how I moved my feet and knees, see video below.

When I had that covered, Josefa told me to run… Me running? I haven’t ran in years, because I found that running induces freezing-of-gait… (If you don’t know what freezing-of-gait is, you can read here and here). Well, if it hadn’t been caught on film, I probably wouldn’t have believed I did run…

With Josefa pointing out what I did wrong, I was actually able to correct my posture and gait to the point that I could walk almost normally. Those who know me well will be surprised to see me in the video below, carrying a glass of water while walking and even being able to avoid obstacles in the form of the physiotherapist Daniela.

The third rule of the Fight Parkinson’s Club: If you can do it, let’s complicate it!