Jasmine Sturr, Full version:
Excerpt: using nicotine vape for managing dyskinesias:
Before my Parkinson’s had evolved into the kind with “freezing-of-gait”, or FOG for short, that now is far more familiar than I would like, I had a very hard time to wrap my head around the phenomenon: “Why do they just stand there? Why don’t they just lift their feet and walk like they did just a second ago?” Well, these days I know better…
On any given day, my ability to walk will vary immensely over the course of the day, mostly relating to my medication intakes: the longer from the previous dose, and also a bit after my next dose, the more effort I will have to use for walking and moving in general and the more likely I am to end up in a “FOG-episode”. But, to add some spice to the mix, my FOG can also be triggered at any time by anything unexpected, like a sudden movement or a sudden noise. That kind is very difficult to prepare for, because how do you prepare for the unexpected…
I can imagine that people around me are just as puzzled as I was a couple of years ago when I saw someone freezing: “Why does she just stand there? Why doesn’t she go through this door that I am holding up for her? Oops, did she just fall???” I have come to realise that falling is a very “social” thing. Let me explain: a couple of hours ago, I was crossing a small street on my way to the grocery store. Someone behind me called out unexpectedly and, of course, I wobbled, stumbled and ended up with my right knee on the ground. The person who called out came up to me with his two buddys, all equally inebriated and on the way to the store. I would guess, judging by their “atmosphere”, that it had been several days since either of them was sober and they all displayed the classical broad-stance walking of a longtime alcoholic. They put me gently but unsteadily back on my feet and didn’t leave my side until they had made sure I wasn’t going to fall again. When I went on my way, I had a number of annoying questions twirling in my head, the most powerful one of course being: “What is it with this f***ing disease???” But also: “How kind of them to help me! I wonder if I would have done the same for them?”.
And this is where the social aspects come in. Think about it: someone falling quickly becomes the centre of attention. People come to help, lift the person to their feet, brush of their clothes, etc. And as a person who increasingly find myself on the receiving end of such kindness, I can tell you that it evokes mixed feelings. Don’t get me wrong, of course I appreciate the kindness of people, but at the same time, the FOG itself often makes me wish that I could just sink through the ground and disappear.
If there is one thing that Parkinson’s teaches you, it’s humility