The Fight Parkinson’s Club

On our way from the airport in Lisbon to the rehabilitation centre  Campus Neurológico Sénior (or CNS for short, pun intended, I’m sure) in Torres Vedras, our wonderful physical therapist, Josefa, says something about “the first rule of…”, and immediately the film “Fight club” springs to my mind. I blurt out “…don’t talk about Fight club” and both Josefa and Jon (who will be instructed by Josefa and her colleagues this week as well) look at me like they think I am completely crazy. When I explain that there is a film with that name and that I just had the idea to call our week at CNS “Fight club”, they seem slightly more relaxed and even seem to think the idea wasn’t half bad.

I had gone to Portugal with the determination that I will do everything in my power to take control over my freezing-of-gait (I’ve written about it before here and here) and I expect it will not be easy so Fight club seems a good name.

Parkinson’s is a very complex condition with a lot of different aspects, both motor and non-motor to keep track of. I would still expect Swedish healthcare to be up to speed on the latest research in rehabilitation and high-quality knowledge and experience in Parkinson’s. I am however sorry to say that of the several rehabilitation centres and physical therapists I have come across in Sweden since I’ve had problems with freezing-of-gait, not even one  of them knew anything about it that I didn’t already know myself.

This is where it REALLY pays off being an activated patient!

I had met Josefa a few years  earlier at a scientific meeting and we had bumped into each other at different conferences and congresses since then. I remembered that she was working with freezing-of-gait and figured it was worth asking.

I am very happy I did, because the three first days of training here have been simply mind-blowingly eye-opening!

Day 1 started with evaluations of gait and I found myself, not surprisingly, freezing instantly when I was told to compete against Josefa and Jon. To my surprise though, the very simple strategy of focussing on the heel worked like a charm. I was almost as fast as them and didn’t even tend to freeze.

I didn’t for a second dream that I would be able to walk on a treadmill, and here I am after 3 days, walking backwards, turning and following instructions (see video)…

Where on earth will this end?

The first rule of Fight club is: do not fall!

N.B. The descriptions of strategies and exercises in this blog are recommended to me based on individual evaluations by a trained medical professional. They are not to be seen as general advise to people with Parkinson’s.