Edit on 16 December 2020: I am now almost back to “normal” (whatever normal is when living with a progressive illness…). Looking forward to relaxing over the holidays.
Tracking has probably never been more talked about than right now, during an ongoing global pandemic. Having an interest in self-tracking, I have of course followed the development with great interest, both on a global level, as well as on a national, regional, and local level. My interest on an individual level so far, has mainly been focused on trying to make the right decisions to avoid getting infected with COVID-19.
However, a few days ago, my personal interest in tracking COVID-19 increased, when I started noticing symptoms consistent with a COVID-19 infection. I have since then tested positive for ongoing infection and in this post I want to share a few learnings from my first few days.
A few days ago, I had some disappointing news. I have been working on my PhD in the area of digital selfcare and self-tracking in Parkinson’s disease since 2012, which is probably starting to be a bit too long. I was therefore very happy to be able to submit my application to defend my thesis before the university went on summer holiday. In the application I aimed for thesis defense in late November, the examinators and the opponent had confirmed their availability and I was starting to look forward to D-day. Of course I was well aware of the potential obstacles that were left to clear. The vetting of an application to defend a doctoral thesis at my university entails two separate parts. The first part checks things like that any of the supervisors (current or previous) have not published anything with any of the examiners or the opponent and that the scientific articles that the applicant wants to include in her thesis are of sufficient quality and extent to be equivalent to at least four years full time work. The main supervisor also submits her statement of the doctoral student’s learning process and development during her time as a doctoral student. The second part of the vetting is dedicated to ethical aspects.
I’m sure most of you have seen me write once or twice before that PD is a very complex disease, but it bears repeating:
PD is a very complex disease!
Let me explain to those of you lucky enough not to know first hand (or by proxy, like my husband and daughter do). If you’ve followed my work, you probably know about my complicated medication regimen, not unusually complicated if you have PD but very much key to my health and well-being. There are essentially four major types of PD meds: L-dopa (or levodopa), which goes into the brain and transforms into dopamine, the neurotransmitter that PD “steals” from us, dopamine agonists (or DA’s for short), which “imitates” some of the effects of dopamine in our brains, COMT inhibitors, which when taken simultaneously with L-dopa, lengthens the active period of the L-dopa, and MAO-B inhibitors, which helps to block the natural breakdown of dopamine in the brain. All of these act to increase the levels or effects of dopamine in our brains, which in turn restores some or even most of our normal patterns of movement as well as addresses, to a varying degree, the non-motor symptoms that comes with reduced levels of dopamine in the brain, such as for example depression, autonomic dysfunction, pain or sleep issues. My medication regimen consists of one of each of these types of PD meds, in different combinations throughout the day.
Neurotransmitters are chemicals that that help transmit signals in our brains, from one nerve call to another nerve cell, muscle cell or gland cell. There are plenty of different neurotransmitters, each with different chemical compositions, purposes and functions in our nervous systems. Dopamine is one of the most important for controlling our movements and is also involved in the reward system in our brains. Another important neurotransmitter is acetylcholine, which interestingly also is involved in our movement, it helps control our muscles. Acetylcholine also plays an important role in attention and motivation.
So why am I giving you a crash course in neuro science? Well, apart from the fact that the brain is the most sexy organ there is (look up the word “sapiosexual”), as a person with PD, my curiosity in neurotransmitters has very recently been key in my successfully managing an increasingly difficult disease.
During the last few years, I have been increasingly troubled by freezing-of-gait, my least favourite PD symptom. (For more info on freezing-of-gait, see: Bruised knees and bruised ego…, Sara Riggare on ‘How Not To Fall’ and Parkinson’s never takes a day off). Imagine my delight when a study was published in The Lancet Neurology in January of this year titled: “Rivastigmine for gait stability in patients with Parkinson’s disease (ReSPonD): a randomised, double-blind, placebo-controlled, phase 2 trial“, and, being the engaged patient I am, I emailed my neurologist, attaching the article, asking him for a prescription. A few days later, I went to the pharmacy and picked up my new medication, Rivastigmine, which is an acetylcholinesterase inhibitor, meaning that it inhibits the enzymes responsible for the breakdown of the neurotransmitter acetylcholine in the brain, thereby increasing the levels of acetylcholine. The article argues that treatment with an acetylcholinesterase inhibitor could improve gait stability in people with Parkinson’s who have fallen during the last year.
During the following weeks I followed the scheme my neurologist had given me for introducing this new medication, while trying to find a constructive balance between objectively observing the potential effects and living life as usual. After a rather terrifying experience when I went from 3 to 6 mg in my morning dose, I tapered it off again. The terrifying part meant that I found myself more or less unable to move, literally, a few hours after taking this higher dose. I felt almost like a statue and it would have been very interesting if I hadn’t felt so scared. I was very glad to get hold of my PD friend, who also is a neuroscientist at that time. He gave me a bit of a lecture about neurotransmitters and assured me that the effect was likely to wear off and my mobility return to normal (for a Parkie). Later that day, I could confirm his theory, at which point he was kind enough to point out to me that I couldn’t know for certain that the Rivastigmine was responsible for the effect I experienced unless I repeated the experiment. I haven’t. Yet.
I went back to 3 mg per day and over the last few weeks, I have found myself really struggling with moving and walking. I usually say that living with PD takes an olympic gold in stubbornness, but over these last few weeks, it has been much tougher than I probably have been prepared to admit to myself. Thinking back, I have not been able to do much more than doing my daily dose of exercise, working, falling asleep on the couch, watching TV and then going to bed. And with PD, you can’t really be sure what’s wrong until you’ve done a fair amount of troubleshooting:
First, observation: “Hmmm, I don’t feel well today… my whole body is heavy, my back hurts, my hands move slowly… even more slowly than usual…. I wonder what’s wrong…?”.
Then, hypothesis testing: “Am I coming down with something…? Do I have a pinched nerve in my back or lumbago….? Or did I forget to take my meds….? Have I been stressing too much… or sleeping badly….? Or…., the worst fear: is my PD suddenly progressing faster…?”
This kind of troubleshooting takes some time, as you can imagine… But I am very happy to tell you that I feel much better today! So, what is different today? I’ll tell you: My neuroscientist friend with PD told me that our movements are really controlled by the balance between dopamine and acetylcholine (this is of course an extremely simplified explanation) and in simple terms: the Rivastigmine was likely to somewhat cancel out the effect of my dopamine enhancing medication. When this crucial piece of information had reached its way into my brain, I formed a new hypothesis which I tested this morning: this morning, I took more L-dopa than I usually do and what a success it was! It was such a relief to be able to move effortlessly again (well, effortless by PD standards anyway…)! My family and colleagues will tell you that I have been smiling the entire day from the pure joy of moving!
This approach enables me to keep living as well as I can with this very complex disease!
Image copied from the article “The quantified self Counting every moment”, published in The Economist March 3rd 2012 (http://www.economist.com/node/21548493)
I have called myself a self-tracker since the first time I heard the word. The concept of using technology to collect data about myself and then analysing that data to better understand different aspects of myself and my surroundings has always resonated strongly with me, both as an engineer and as a researcher.
But I don’t track every day. I do however collect data almost every day, mainly relating to my physical activity (steps) and sleep. I don’t consider that tracking though. I consider self-tracking to be a process, and I often use the PDSA-cycle (plan, do, study, act) to explain it, and if not all the steps are addressed, it is not self-tracking.
For self-tracking, I specify the steps as goal-setting, data collection and analysis, reflection, and decision-making and, in my opinion, it is essential that we interact with our data, put our data into a context and reflect on what it means. That is when the magic happens!
When I first learnt about the Quantified Self movement and presented at the first QSEU conference in Amsterdam in November 2011, I thought it was all about the technology, about the gadgets. With time, I have realised that it is not, technology is important, but as a tool, not as the goal itself.
The goal is to use your own data to answer your own questions.
The collection of data can be facilitated by the use of technology but it is not necessary.
In 2011, I was very optimistic, we probably all were: the emerging technologies would be able to help us better manage our diseases in ways we couldn’t even begin to imagine. I still think we have a lot to gain from using more technology in chronic disease management, but I am significantly less optimistic.
Self-tracking is really hard!
Firstly, it is very difficult to ask the right questions, like: What do I want to achieve? How can I even measure that? What kind of data do I need? How can I collect it? And how to analyse? and last but not least: What on earth do these results mean? Different questions and approaches are likely to require very different tools, knowledge and skills.
Secondly, it is very, very difficult to design and develop tools for self-tracking that are accurate enough to give correct and valid results but at the same time versatile enough to enable the users to explore their own questions, and not only the ones that healthcare or the device manufacturers thought were the relevant and important ones.
And, finally, self-tracking takes time. A lot of time. And if you are already spending a significant amount of your time on managing different aspects of your disease, maybe you just don’t want to add more chores. In my case for example, I take six different prescription medications, five times per day, in three different combinations, with four different time intervals. These pills need to be organised, distributed, restocked etc and this takes time. In order to stay as well as I can for as long as I can, I also need to make sure I get enough exercise, which of course also takes time. To add more tasks, like self-tracking, would mean less time with my family.
Self-tracking has to be worth the effort. And to me, most of the time, it is not. I track when I have a good reason, for example when I want to find the best timings for a new medication dose or if I want to investigate a suspected new symptom.
You’ve probably heard the expression: “burden of disease”, frequently used in Public Health as a measure of the impact of health problems, to for example a country or a region. Carl R May, Victor Montori and Frances Mair have proposed the expression “burden of treatment” as a measure of the work we patients have to do to care for ourselves, for example managing treatments and doctor’s visits, lifestyle changes etc.
When discussing the future of healthcare, it is very often predicted that patients will collect a lot of data on their own devices. But will we? Will the effort of tracking pay off in the form of actual health improvements?
I would like to suggest that we start talking about
For the last year or so I’ve been working in a project funded by the Swedish government’s national strategy to treat and prevent chronic diseases. We call the project “Dagens patient” (“Patient daily” in English) and you can read about it here. “Dagens patient” is based on my work around self-monitoring my Parkinson’s and we currently work with people with Parkinson’s and MS, exploring different aspects of self-monitoring together. One member of our Parkinson’s group has done some really interesting things and she talks about it in the video below. It is in Swedish but has English subtitles. Let me know what you think about it!
If I could only attend one conference a year, I know exactly which one I would choose: Quantified Self Europe. I have a very special relationship with the Quantified Self Europe conference in Amsterdam. In fact, I actually wrote my first two posts on this blog during the first QS Europe conference in November 2011 (read them here and here).
I have always felt so welcome and comfortable in the QS community, both at all the 3 QS conferences I’ve attended in Amsterdam and the Bay Area meetup I attended in September 2013. I remember watching Caspar Addyman’s ignite talk in 2011 and first regretting that I was sitting in the middle of a row and therefore wouldn’t be able to leave without drawing attention to me… but then I thought again… and I realised that what Caspar was talking about could actually be used for helping people with Parkinson’s. At the next QS Europe conference, we gave a joint talk about that.
When I came home from the third QS Europe conference, I tried to explain to my husband what is so special about QS. I thought for a while and then realised:
At Quantified Self, I forget I have Parkinson’s.
Because at QS, no-one evaluates or assesses you, no-one judges, no-one looks at you and wonders what Hoehn & Yahr stage you are or what your UPDRS score is. At QS everybody measures something about themselves but they also respect your efforts to improve your life and your health without judgement. That is a very empowering feeling!
I am looking forward to attending my first QS Global conference in San Francisco 13-15 March 18-20 June 2015 (see info here) and I hope I won’t be the only parkie there.
Let’s meet in SF in June and share our best ideas to forget we have Parkinson’s!
My week at the neurorehabilitation centre CNS in Portugal was fantastic and I can’t thank the physiotherapist Josefa and her colleagues enough for sharing their skills and encouragement. I also want to thank Jon for literally pushing me to accomplish more than I thought I could (see video below or link to video here at 1:25) and generally being a good sport.
On our 6th day at the centre for neurorehabilitation in Portugal, CNS, it was time for evaluation and reflection. How much can you actually achieve in just 5 days of training? We were about to find out…
Josefa, the Portuguese physiotherapist who loves to complicate things (but only if it’s useful), put us on the balance evaluation pressure plate, first me and then Jon. I had noticed Jon’s posture really improve over the course of the week and he also seemed to have less tremor. On the day before, Portuguese television had come to the centre for interviewing Josefa and her colleagues and they also interviewed Jon and me. I think that Jon really enjoyed being able to dazzle the beautiful interviewer with his impressive knowledge of neuroscience.
Josefa did not expect our results to have changed significantly from only 5 days of training so she was very surprised when both Jon and I showed a marked improvement in the different balance tests.
For the afternoon we were going into Lisbon for some sightseeing and shopping. But as usual, Josefa had an additional agenda. She wanted to put my newfound knowledge and anti-freezing strategies to the test in the busy streets of the capital with the unpredictable crowds and ruthless cars. Her boss, neurologist professor doctor Joaquim Ferreira looked slightly worried when she told him but he decided it was at least safer than in Rome.
But first, the very last training session for this trip and once again Josefa was able to surpass herself when complicating things. You may recall from my previous posts (here, here, here and here), that she had already made me walk on treadmill with my feet strapped to the treadmill with rubber bands and also walking in the pool with flippers on my feet. So what would be the logical next step you ask?
Yes, of course: walking on the treadmill with flippers!
When walking on the treadmill like some sort of amphibian, something really clicked… A huge lightbulb moment! And for those of you who do not have Parkinson’s, this will probably sound really stupid and self-evident, but I realised that if I use my abdominal muscles when I walk, I don’t have to jerk and fight to make my feet go forward… And what’s more, it felt like the freezing was more under control. Hmmmmm…… interesting…..
And in Lisbon, I put my new hypothesis to the test. I was very careful to activate my abs on every step and it felt REALLY good. I tried manoeuvring crowds and going in narrow passages, something that would have had me stopping dead in my tracks on one foot, trying to find the ground with the other only one week earlier. And it went amazingly well! Josefa was almost as exhilarated as I was and Jon tried masking his happiness for my progress by pretending to be disappointed he wouldn’t be able to make me freeze by startling me any longer.
We celebrated our extremely intense week and all our successes at a wonderful restaurant and watched the sun set in the Atlantic. What a week!
Thank you Josefa, Alice, Verónica, Francisco, Daniela, Pedro, Mariana, Rita, Rita, Rita, Joao and all the rest of you wonderful people at CNS! I will be back!
These last five days at the centre for neurorehabilitation CNS in Portugal have been eye-opening and extremely hard work, I have learnt so much and had so much fun. You can read about the previous days here, here, and here.
There has been Nordic walking gait training, balance exercises, home training program, walking and even running on a treadmill, multi-tasking training, Ronnie Gardiner Rhythm Music Therapy, hydrotherapy, and combinations like walking on treadmill while doing brain training or walking in the pool wearing flippers while calling out words beginning with “L”.
I have improved my posture, as shown on the photos here and I have a lot of self-tracking data to analyse. During my time here, I have been measuring my heart rate, made notes about activities and observations and I have been wearing sensors to track my movements on my feet.
Day 5
I have also learnt strategies for dealing with freezing when it happens. The physiotherapist Josefa and I have been discussing freezing-of-gait a lot and identified the different situations that might trigger freezing. Then I have been exposed to situations for trying to provoke freezing, both in the centre and under more natural conditions.
I have realised that I cannot always avoid freezing from happening, but I can learn to control the situation using coping strategies. When a sudden sound or movement triggers freezing, rather than persisting in trying to find my stride again, I stop with one foot slightly in front of the other for optimal balance, and then restart. Most of the time I can now avoid freezing by focussing on the heels and counting my steps in my head.
The big question now is of course: How to make this stick? Well, it will not be easy, but it will definitely be worth it. And today I will be testing my new knowledge in a naturally stressful environment. We will be going into Lisbon for some sightseeing and there will be lots of people to challenge my balance and confidence in walking, there will be lots of noice to stress my brain and there will be crossing streets with cars approaching.
Next week, I will be back in Stockholm, continuing my training.
The fourth rule of The Fight Parkinson’s Club is: If it feels uncomfortable, you’re doing it right!
