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 defence in late November, the examinators and the opponent had confirmed their availability and I was starting to looking 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 of 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 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!
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!
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
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.
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!
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.
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!
The “internal feedback system” of people with Parkinson’s does not function properly. I have no idea what the neuroscientific explanation is but I think that our body awareness is seriously flawed. We simply don’t know where we have our arms and legs or how we use them, that is why we walk in a strange way and hold our bodies in uncomfortable positions. I know it is difficult to believe or understand but it is like our bodies’ internal mirror is broken.
This means that it is a challenge for me to correct my posture and adjust my gait, even with the help of an actual mirror. It is as if the effort it takes to just hold my rigid body upright with muscles not able to work at the proper speed, makes it impossible for my brain to process the information from the mirror about my posture at the same time. Strangely enough, I am very good at observing how other people move their bodies and spotting unnatural patterns.
Luckily enough, there is a solution to this: external feedback using filming. When I see a film of myself walking, especially with someone pointing out what is wrong, I can see it myself and try to correct it. These last few days at the neurological rehabilitation centre in Portugal (see previous posts here and here), have been truly eye-opening and full of “aha moments” of huge importance. I have literally found muscles that I had no idea I had every day and I can feel that in my body this morning of the fifth day of training.
Every day has been a breakthrough in body awareness and yesterday was no exception. Our wonderful physiotherapist Josefa had put us on treadmills and Jon, the grumpy but brilliant neuroscientist with Parkinson’s, and I were walking like it was the easiest thing in the world. And to complicate things a bit, Josefa had strapped strong rubber bands around my ankles, pulling my feet back forcing me to be more aware of how I moved my feet and knees, see video below.
When I had that covered, Josefa told me to run… Me running? I haven’t ran in years, because I found that running induces freezing-of-gait… (If you don’t know what freezing-of-gait is, you can read here and here). Well, if it hadn’t been caught on film, I probably wouldn’t have believed I did run…
With Josefa pointing out what I did wrong, I was actually able to correct my posture and gait to the point that I could walk almost normally. Those who know me well will be surprised to see me in the video below, carrying a glass of water while walking and even being able to avoid obstacles in the form of the physiotherapist Daniela.
The third rule of the Fight Parkinson’s Club: If you can do it, let’s complicate it!
I have been trying to think of an appropriate symbol for Parkinson’s and finally I have found what I think is the perfect representation: a snail. People with Parkinson’s move slowly, as does the disease itself, but often we are persistent and get where we want in the end, very much like our little mollusc friend.
This is my fourth day at CNS, the neurological rehabilitation centre in Torres Vedras, close to Lisbon and if you haven’t read my first post of this week, you can find it here. My favourite Portugese, the extremely competent physiotherapist Josefa is observing my every move, but in a good way. We discuss everything relating to Parkinson’s, freezing-of-gait, chocolate, life as a PhD student, shoes, South Africa, and more. We were discussing behaviour change and motivation, since in Parkinson’s, motivation can be very hard to find. The reduced levels of dopamine in our brains does not only make moving extremely challenging, it also has a direct effect on our motivation. This means that although we know that we need to stay active to be able to stay as well as possible, we just cannot be bothered…
This is where using camera can be very valuable, like in this case, where I was filmed after walking on the treadmill. For me to see that my gait can be so different after only 15-20 minutes walking on a treadmill, makes me extremely motivated to continue fighting Parkinson’s!
The second rule of Fight club is: use it or loose it!
On our way from the airport in Lisbon to the rehabilitation centre Campus Neurológico Sénior (or CNS for short, pun intended, I’m sure) in Torres Vedras, our wonderful physical therapist, Josefa, says something about “the first rule of…”, and immediately the film “Fight club” springs to my mind. I blurt out “…don’t talk about Fight club” and both Josefa and Jon (who will be instructed by Josefa and her colleagues this week as well) look at me like they think I am completely crazy. When I explain that there is a film with that name and that I just had the idea to call our week at CNS “Fight club”, they seem slightly more relaxed and even seem to think the idea wasn’t half bad.
I had gone to Portugal with the determination that I will do everything in my power to take control over my freezing-of-gait (I’ve written about it before here and here) and I expect it will not be easy so Fight club seems a good name.
Parkinson’s is a very complex condition with a lot of different aspects, both motor and non-motor to keep track of. I would still expect Swedish healthcare to be up to speed on the latest research in rehabilitation and high-quality knowledge and experience in Parkinson’s. I am however sorry to say that of the several rehabilitation centres and physical therapists I have come across in Sweden since I’ve had problems with freezing-of-gait, not even one of them knew anything about it that I didn’t already know myself.
This is where it REALLY pays off being an activated patient!
I had met Josefa a few years earlier at a scientific meeting and we had bumped into each other at different conferences and congresses since then. I remembered that she was working with freezing-of-gait and figured it was worth asking.
I am very happy I did, because the three first days of training here have been simply mind-blowingly eye-opening!
Day 1 started with evaluations of gait and I found myself, not surprisingly, freezing instantly when I was told to compete against Josefa and Jon. To my surprise though, the very simple strategy of focussing on the heel worked like a charm. I was almost as fast as them and didn’t even tend to freeze.
I didn’t for a second dream that I would be able to walk on a treadmill, and here I am after 3 days, walking backwards, turning and following instructions (see video)…
Where on earth will this end?
The first rule of Fight club is: do not fall!
N.B. The descriptions of strategies and exercises in this blog are recommended to me based on individual evaluations by a trained medical professional. They are not to be seen as general advise to people with Parkinson’s.
Parkinson’s is hard work. A friend of mine, on his way to becoming a neurologist, says to his patients: “Having Parkinson’s is a full time job”. I have never told him, but I have been thinking he exaggerates, but I was wrong. If you want to stay as well as you can, Parkinson’s is a full time job.
One of the main challenges is that the disease is so complex. We need to observe a multitude of unpredictable motor symptoms like slowness of movement, tremor (which I don’t have), stiffness and balance problems. But, in light of Robin Williams’ suicide, which might or might not be directly linked to his recent Parkinson’s diagnosis, the implications of low or fluctuating levels of dopamine on our psychological well-being are now more acknowledged.
As we get farther into the disease, we experience more and more symptoms and the list of complaints gets longer and longer. But how do we know if a new symptom is related to Parkinson’s or not? Well, we don’t. And most of the time, neither do our doctor. “But”, you may ask, “does it really matter if a particular health problem or symptom is related to my Parkinson’s, to the fact that my thyroid was removed a decade ago or to something completely different?” My reply is “it does and it doesn’t”.
If we start by considering: 1) I have been diagnosed with Parkinson’s and 2) I have had my thyroid removed. These two have certain overlapping effects and symptoms, they can for example both potentially affect my heart rate (see my previous post). So if I discover that my heart rate is affected, do I go to a neurologist or an endocrinologist? As it turned out, I did neither. Instead I used a new (for Sweden) service where you can order your own lab tests online, without having to consult a doctor first. Then you go to a regular lab to have your blood drawn, wait a few days and the results are available online. I used a service called WeRLabs and I am currently waiting for my results.
As you can see, this question is already very complex. And my elevated heart rate is not even my most troublesome symptom. My least favourite Parkinson’s symptom is freezing-of-gait and this film shows a talk I gave on the topic at the Quantified Self Europe conference in May 2014.
I am finding it more difficult to cope with my freezing and I do not always feel comfortable crossing the street, especially with heavy traffic. For some time I have felt a need to do something about it and now I am. Tomorrow I fly to Portugal for a week of neurorehabilitation with a physiotherapist who is specialised in Parkinson’s and freezing-of-gait. Of course I will be bringing some self-tracking tools!
I am looking forward to a week with a lot of new insights and I hope I will find the time to write a blog or two as well.