Excerpt: using nicotine vape for managing dyskinesias:
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
Last week was a week of contrasts for me. On Tuesday I left Stockholm for New York City and the purpose of my trip was to attend a workshop at The White House in Washington DC. The workshop was on a topic very close to my heart: engaging participants as partners in research and it was organised jointly by the conference Stanford Medicine X and the Office of Science and Technology Policy at The White House. The intention from the organisers was to, by using design principles, 1) identify what’s working, 2) strengthen the community of innovators in the area, and 3) accelerate progress.
Exploring opportunities and challenges relating to engaging participants as partners in research is of course important. But I think there is also a bigger issue at play here, namely WHY we should engage participants as partners in research in the first place. In an article from 2015 called “We the scientists”: a Human Right to Citizen Science (Vayena E, Tasioulas J. “We the Scientists”: a Human Right to Citizen Science. Philos Technol. 2015;28(3):479-485. doi:10.1007/s13347-015-0204-0.) , authors Vayena and Tasioulas discuss the human right to science and connects it to article 27 of the 1948 Universal Declaration of Human Rights. Vayena and Tasioulas argue that participation in science should range from being a professional scientist to being a participant in a conventional clinical trial performed by professional scientists but also include more active participation in the form of e.g. individuals contributing data or observations, collaborating with researchers on funding research, setting the research agenda, and participants even taking the lead in initiating, designing and carrying out the research themselves.
And if a reference to the Declaration of Human Rights is not enough
to convince you, consider this: In the ‘dark ages’, before the Internet, knowledge was scarce. If you wanted to learn medicine, you had to go to university to study. Sure, you could pick up bits and pieces in books at the library but on the whole, (medical) knowledge was difficult to come by on your own. Times are very different now, we can all learn literally everything we want, using the tools and information available to us online. And in my opinion, it is a good thing that knowledge is democratised and available, it offers us plenty of opportunities but also a few significant challenges. One of the most exciting opportunities, and if you ask me, probably the best thing since sliced bread, is that we are now so many more people that can access the knowledge necessary to collaborate to solve the many remaining medical mysteries, like how to cure cystic fibrosis, cancer or genetic prion disease, or how to design better cardiac defibrillators or closed-loop-glucose-monitors-insulin-pumps or stoma bags and also how to enable us all to communicate across obstacles caused by injuries or diseases. Slightly more discouraging is that we are basically still doing research in the same old way as we did in the not-so-long-ago pre-internet days. Why are we doing that? Wouldn’t you say that it is an extreme waste of great minds with so much to give to NOT engage participants as partners? Who can be in a better position to help tease out which issues research should focus on than we, who are living with these diseases every hour of every day?
When I returned to Sweden, I went straight to our place in the Swedish countryside (see pic below), where my family owns a few houses right by a lake in the beautiful area of Bergslagen. The red house is my absolute favourite place in the whole world and as I was enjoying “fika” with my family, telling them about my travels, I was struck by the extreme contrast between The White House and the red house and that I am very fortunate to be able to experience such a wide range of environments. The work we all did at that workshop in The White House is a step in the right direction. My hope is that the work we started in The White House will lead to scientific progress so that many more of the Emilys, Hugos, Erins, Michaels, Danas, Sonias, Matts, Corries, Annes, Dougs, Jelicas, Cliftons, and Saras of the world can spend more time in their “red houses”. And I think it is possible, because these issues are too important not to deal with. These issues matter to people both in The White House and in the red house!