How Not to Fall
Sara Riggare has Parkinson’s Disease and has been using self-tracking to better understand herself. Her most troublesome Parkinson's Disease symptom is freezing of gait. In this talk, she explains why self-tracking is such a big part of her daily life and how she’s using new tools and techniques to track and improve her gait.
I want to talk about how not to fall and why falling is an issue for me. If I were to ask my friends in the Parkinson’s disease patient community which are the symptoms they find most troublesome here are a few examples of things they might say. But if you were to ask me which is my least I would definitely say freezing of gait.
So what is freezing of gait and what does it have to do with falling?
Last October I took a fall and I wrote about it on my blog under the titleBruised knees and bruised ego, here’s what happened. I was walking through a lunch restaurant with my tray on to where you put the dishes when a thought came into my head. If I was to spot someone I recognize now I would probably fall, and I had literally not finished the though when I found myself o my kneed in the middle of the restaurant surrounded by lots of surprised people. The person that I recognized was incidentally one of the supervisors from my Ph.D. as well as a practicing neurologist and researcher came up to me and took my tray. And I stumbled back on my feet and I took a bow to acknowledge the applause I was given for not dropping my tray. I actually didn’t drop my tray when I fell down to my knees. I couldn’t do that in a million years if I practiced.
So freezing of gait is a very strange thing and it’s described in clinical practice and in this article as ‘Brief episodic absence or marked reduction of forward progression of the feet despite the intention to walk’, and that’s the clinical language speaking and I don’t have any idea of what that means, but I know what it feels like for me and I want to show you what it looks like.
Besides I wouldn’t call it clinical phenomenon; it’s very much a phenomenon of the world of people with Parkinson’s for some us us anyway.
So I shot this film of me walking, and that’s what happens when I’m surprised when I’m walking, so my feet will get literally stuck to the ground or that’s the way it looks like. And I’ve been picking this problem apart and concluded that freezing of gait in my case happens when I’m walking and sort of distracted by a sound, a movement, or even a thought like recognizing someone I know.
For example if I’m walking across a conference in London for example, related to the previous talk and I hear a sudden sound or someone approaches, or makes an unexpected noise my feet get stuck to the ground. And as you can imagine that’s not the place you want to be when your feet gets stuck to the ground.
One of the main challenges with having a neurodegenerative disease like Parkinson’s is that it’s the severity is progressive and the range of symptoms will vary in time, even sometimes from one day to the next.
And there is unfortunately not much the doctors can do to help with a lot of these symptoms for patients. The solutions suggest with patients of freezing of gait is often a DBS. Or a Deep Brain Stimulation; basically a brain pacemaker.
It consists on an electrode that’s placed in your brain with wires going down to a unit that’s placed under your collar bone. And I have plenty of friends that have had this operation and have had good effects of it, but personally I’m scared to death of it. I’m very uncomfortable with the thought of having someone poking my brain, and the mere thought of me having to do DBS is actually has triggered both the panic attacks I’ve had so far in my life.
So what did I do?
So I was and I am now you can hear highly motivated to do something and my utmost to avoid a DBS operation, so I wanted to explore and am exploring alternative ways of dealing with my freezing of gait.
And since DBS uses electrical current in the brain to alleviate these symptoms, I wanted to explore using electrical current externally, and this is also being used in clinical studies in Parkinson’s. And the suit you see me wearing is called Mollie. It’s by a Swedish chiropractor and a company called Interventions, and it’s been designed to treat spasticity mainly in cerebral palsy, but also in stroke and other diseases of MS and hopefully Parkinson’s to help problems with muscle tension.
In the suit there are electrodes, and they can stimulate up to 40 muscles simultaneously using a controller unit that’s worn around the waist. And you can also see me on my foot wearing a sensor for movement caption and measuring gait from a company called APDM.
And these pictures were only taken last week, and since then I’ve worn this suite every other third day.
So what did I learn?
I learned four things. I learned that the process of exploration is very empowering. Both the actually learning that comes from the exploring itself, and what’s more important the process of being proactive rather than waiting for someone to solve your problems for you.
I also learned that it’s possible to capture the freezing of gait with these sensors I have on my feet. This is me walking down the hallway with the suit and the sensors and the second plot you can see in the diagram is the freezing episode happened right here. And as you can see the pattern is very different from the rest of it in the diagram and that’s a good think to know because this way I can evaluate other things and how the effect my freezing of gait.
I also learned that persistence pays off and you have to remember we talked already at the first QS conference about sensors for tracking gait. And now I actually have it three and a half years later I have them to use because that’s a good thing because I can now start evaluating my movement in an objective way.
And the fourth thing I learned was the power of networks. We already know that the QS community is awesome, but this is the tweet that Steven sent me while I was preparing for this talk. And he said you should look at this article, and this is an article that came out only last week, actually the same day I did those tests on the 30 April. It’s about transcranial direct current stimulation for the treatment of freezing of gait, and they conclude that they use it with people with Parkinson’s and they say it’s safe and has therapeutic potential.
So my next thing to test is transcranial direct current stimulation, but I don’t know anything about it and if anyone knows about it please come up and talk to me after this so I can learn as much as I can so I can start using it.