Tracking Parkinsons & Medication
Sara Riggare is an engineer, graduate student, and mother. She also has Parkinson’s Disease. In this talk, she shares her insights and experience with tracking how her medication impacted her movement throughout the day and how that enabled her to have more meaningful conversations with her healthcare team.
pen and paper
So this is my first time in California, so I am very excited to be here, even though I am a bit jetlagged as I said. I’m an engineer by training and 3 ½ years to go, I decided to combine my patient experiences with my engineering skills and try and improve things for myself and others with occurring diseases.
So I started studying health Informatics currently in Karolinska Institute, Stockholm, Sweden, and my research is focused on self-care and chronic diseases and especially on self-tracking.
So you are probably wondering what an accordion and James Parkinson and apps have to do with self-tracking. Well, the apps are probably obvious, but the other two are probably not.
The accordion is from an event that took place in a village Hall in a remote village in the north of Sweden on an October evening of 1984. I was 30 years old, and I was listening, together with about 50 of the villagers and my relatives playing accordion, violin, and singing Swedish folk songs.
Everybody in the room were clapping their hands and stomping their feet in rhythm with the music, and I wanted to do the same, but I couldn’t do it. The clapping was okay, but these stomping of the feet just didn’t work; it was as if the signals couldn’t go from my brain to my foot.
It would take almost 20 years before I knew what I had experienced with that event was my first sentence of Parkinson’s disease, or the shaking palsy as James Parkinson, who called it in his essay from 1817.
But one of the strange things and fascinating with this disease is that not everybody with Parkinson’s experiences this typical tremor that gave James Parkinson the title of this essay. About 75% of us do, but 25%, where I am one of them don’t have the tremor.
So a few words about Parkinson’s disease; tremors are one of the four so-called symptoms of Parkinson’s disease where the other ones are Brady-kanesia, which means the slowness of movement. Rigidity, which means stiffness, and posture and gait is basically problems with posturing and gait.
And Parkinson’s disease is a neurodegenerative disease, that results in the reduced amount of neurotransmitter, dopamine in the brain. In most cases the main cause for this reduction in dopamine is unknown, and there is currently no cure for this disease. And dopamine as probably a lot of you know is used for a lot of things by the body and the brain. Among other things, it is associated with the reward system, where the behaviour cognition, voluntary movement, and attention and working memory.
When patients are being diagnosed with Parkinson’s diseases, the cognitive symptoms are being used. However the non-(? 03:30) that goes into your right actually, are the ones that are most troublesome for patients to experience. And there are plenty of articles written that show what physicians think are ported to help us with as patients that we are being most troubled by.
And to make things even more interesting, there are lots of interesting side-effects to the medications that we take as well that can add a bit of flavor to it as well, so it is a pretty complex disease.
Does anyone here know the population of Sweden? Slightly more, 10 million, and about 25,000 of us have Parkinson’s disease. We have a few hundred to help us and others with neurological disorders and problems. So the lack of neurologists and if you know anyone who wants to to Sweden, then please tell me about it.
I see my neurologist about once or twice a year, about half an hour every time; that’s one hour per year. The rest of the year, 8765 hours are spent in self-care. And the situation is similar for my fellow other Parkinson’s disease patients, both in Sweden and other places.
But of course, the one hour spent in healthcare is very important and I can manage myself healthcare, the blue hours, but it is only in this orange hour in my case that healthcare learning and the improvements I can meet my observations and experiences.
It is only in this one hour that I am directly exposed to clinical guidelines and clinical practices. But in the self-care hours that I can observe myself and self-track basically, and I’m going to talk bit more about that on the next slide.
So, the things which I am exploring in my research is can these observations in the blue hours can be brought to the meeting with the healthcare in the orange hour and put to good use. I think yes, of course.
But the gold standard treatment for Parkinson’s is medication, and I take six different prescription medications six times a day, in six different combinations, with six different time intervals. That of course is a very complex regiment, but I am very happy that I have them because without them I wouldn’t be standing here. I wouldn’t be able to move, I wouldn’t be able to work, I wouldn’t be able to take care of myself.
But I am also an engineer and like the curious engineer that I am I wanted to know what effect these medications have on me over the various hours of the day. So I was inspired by a doctors thesis that use a finger tapping test to evaluate people with advanced Parkinson’s in a clinical setting. And I thought I could probably use that myself, so I did a pilot test and it gave me some interesting results.
So, I applied for funding to get into a larger setting and more people and I can use it, and we developed some apps. Mediapp, and Mediapp is used for medication scheduling and reminders and the Tapapp is used for performing with the finger tapping test. It’s basically I tapped my finger – I use my middle finger on my right and left hand for 30 seconds and number of times a day to see how fast I am in my fingers, and how much mobility I have. I also say that the mobility is also equivalent to the mobility in my whole body, and see how it varies over the course of the day with my medication intakes.
So this was the result just before the QS conference in Amsterdam in May, from a few days of my tapping. So the bars you can see our medication intakes; different colors for different medications and they are named at the bottom. The orange line with the orange dots, the dots are the performed tapping test in my left hand, and the blue is from my right hand.
As you can see there is a pattern to this, and there is a pattern that every medication leads to an increase in function, which then drops off and is counteracted by the next medication intake.
I found this very interesting, and have been looking at it since then and looking further at other types of tracking as well. But to my mind in chronic diseases, health is not created in healthcare. Because it is in the blue hours where I implement the practices that healthcare gives me and the achievements that they give me, and I can observe myself in the blue hours and see what effects they have.
To my mind, this is the beginning of knowledge evolution that’s facilities and by technological development that we see around us. Nowadays, we can know as much as the doctors. We can find every information online, and we can use every app and every device that we want to as well as the doctor. So we can learn as much as them about our own health status.
These were my take-home messages. With the proper tools, patients can and this is what I have done myself and I think more people can do it as well in different conditions. Learn about their conditions and take control of their diseases and contribute to their own health.