#Parkinsons1day is a project initiated by Roni Zeiger and Gilles Frydman of Smart Patients, an online community where patients and caregivers learn from each other about treatments, clinical trials, the latest science, and how it all fits into the context of their experience. The community started in cancer but is now also moving into other diseases and conditions.
In april 2015, a few persons affected by Cystic Fibrosis (CF) were matched with people who wanted to learn about CF with the support of Smart Patients. The experiences were shared on social media and described in this post on Smart Patients.
And now, yes you guessed it, it’s time for Parkinson’s! I will be sharing my experiences of living with Parkinson’s during one day next week with Gilles Frydman and on social media. Follow the hashtag #Parkinsons1day on Twitter for more information!
Parkinson’s is a neurodegenerative disease, meaning that it gets worse as time goes by and there is no cure. If you think about it, life itself shares those characteristics, but there is one important difference. For us having Parkinson’s, the downhill slope is much steeper than for people without a neurodegenerative disease for company.
The good thing is: there is plenty we can do to help ourselves! If you have read my blog before, you might remember my visit to the neurorehabilitation centre in Portugal and how much benefit I found from exercise. Unfortunately I find it very difficult to maintain my exercise regimen at home, and one of the main reasons is that I have been struggling to find a physiotherapist within a reasonable geographic area who knows enough about Parkinson’s to be able to help me come to grips with my biggest issue, which is “freezing-of-gait”. I will keep looking and any tips, suggestions and ideas are more than welcome!
I am currently reading a very interesting book that supports my belief in exercise as a very potent complementary treatment for Parkinson’s and many other neurological problems. The book is written by Norman Doidge and is titled “The Brain’s Way of Healing” and was recommended to me by a friend with a complex neurological condition that the medical world have failed to address, leaving my friend to help himself as best he can (which he does quite successfully).
My “Parkie” friends will be interested to know that “The Brain’s Way of Healing” has an entire chapter dedicated to Parkinson’s, where the author in commendable detail gives an account of the experiences of John Pepper. John Pepper is in no way uncontroversial in the Parkinson’s world, being known for his website “Reverse Parkinson’s” and his book with the same name. Without commenting on whether or not John Pepper’s methods are scientifically sound and sufficiently stringent, I can only say that what I read in Doidge’s book really resonated with me and supports my own conviction that my medical treatment for alleviating my Parkinson’s symptoms can be significantly enhanced by the use of exercise.
To me, this is a great consolation on days when Parkinson’s really gets to me and everything feels black and hopeless. Because, I’ll be honest: knowing that Parkinson’s never takes a day off in the constant gnawing away on my motor and non-motor functions is not an easy burden to carry, even on the brightest and sunniest of days. I make sure to remind myself, as often as I can, that every effort I make to keep moving, helps keep neurodegeneration at bay for a little longer. I do my very best to be as stubborn as Parkinson’s is relentless. Time for a walk!
Parkinson’s never takes a day off so neither can I!
Life in 18th century France was probably far from easy, although less difficult for some. The aristocracy were living relatively comfortable lives, where the very small minority were enjoying privileges that the large masses could only dream of. In fact, they couldn’t even dream there was such privileges. And we all remember the allegedly immortal words of the well-meaning but clueless Marie Antoinette: “But if the people don’t have bread, why don’t they eat cakes?”.
I would guess that the aristocracy didn’t really understand what the fuss was all about: “Why are these people upset? We have always taken care of them. We know what is best for them. They don’t need to worry their heads with the problems of the world, they are not even interested anyway…”. And we know what happened: the aristocracy didn’t have to worry about haircuts ever again…
That attitude feels strangely familiar… And sure, with more rights comes more responsibilities. The right to vote is still not universal, and in Sweden, women didn’t have the same rights to vote as men until 1919. I don’t know about you, but in my opinion, my health is more important to me than who is the prime minister in Sweden (sure, the two are not independent but still).
People often tell me: “But Sara, you have to remember that not all patients are as engaged as you, you are an outlier…” My response is always: “I know that I am an engaged, knowledgable autonomous patient now, but 7 years ago I wasn’t, I was just an ordinary patient.”
The French Revolution, The Suffragett Movement and the Anti-apartheid Movement were all started by outliers. The masses were probably not very interested in what they were shouting about, they just wanted to do their best of a difficult situation… at first…
In my opinion, large parts of healthcare’s logic is based on the assumption that the doctor always knows best. And we patients have accepted that assumption for centuries, but times are changing.
We want to take more responsibility when it comes to our health!
The world cannot afford letting patients’ engagement and knowledge be wasted any longer!
The general image of Parkinson’s disease is probably an old man with hands that are shaking, walking slowly and shuffling. In fact, that was my image of Parkinson’s before I was diagnosed myself. And we all know that those kind of images are very difficult to change… or are they?
A friend did an image search on Google for “Parkinsons sjukdom” (the Swedish name for our common enemy) and was surprised in a good way. And since surprises rarely are positive in chronic diseases, I thought I’d share the reason.
In Swedish, the first hit on Google image search is a pic from this blog! I guess that is one of the advantages of living in a small country: it is probably easier to have an impact.
I am very proud to be contributing to changing the image of Parkinson’s
– one blog at a time!
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!
A google search for “What is health?” just resulted in approximately 23 200 000 hits and I think that the number of different answers to the question is far greater still. The quote to the left is one of my favourite phrases about health and it is by the American 19th century author, poet, philosopher and much more, Henry David Thoreau. His words really resonates with me, as a person living with a difficult chronic progressive disease, health is not something I take for granted . But, and it is a big but, I also know that I have everything to gain from being an active participant rather than a passive bystander in the “battle” of my health.
In Parkinson’s, our neurologists assess our health using an almost infinite number of different scales; generic scales like EQ-5D, SF-36, EuroQoL or specific like UPDRS, PDQ-39 and many many more. To my mind those scales have very little to do with my own understanding of health. They are probably useful within healthcare, when you want to compare treatment results across clinics or make health economic evaluations. But do they REALLY measure health?
My personal definition of health is to not allow my condition to limit my life while at the same time not take unnecessary risks.
Given that my most troublesome symptom of Parkinson’s is freezing-of-gait, a strange phenomenon causing my feet to literally seem like they are stuck to the ground (see film clip below), especially in stressful situations, like for example crossing a busy street, you can see where the potential risks would come in.
Of course my definition is pretty much impossible to quantify in an objective manner but nevertheless, this is the way I want to live my life. And healthcare is aware of the risks associated with freezing-of-gait. In fact, freezing-of-gait is seen as a serious symptom, due to the obvious risk of falling and therefore is given a lot of attention from our neurologists. And they have treatments to offer for “advanced Parkinson’s disease”, which this symptom can be one of the signs of. My neurologist has told me that research has shown that with my combination of symptoms, I am likely to be a candidate for deep brain stimulation (DBS), a surgical procedure where electrodes are placed deep into the brain and connected to a kind of “brain pacemaker” placed under your collar bone. Don’t get me wrong, I have plenty of friends who have had this procedure with very good results and I am very happy that advanced treatments are available. But I am determined to make sure I have tried everything else in my powers before I let someone poke my brain while I’m awake (yes, the operation is performed with the patient awake to ensure that the desired effect is achieved from the electrodes…).
In summary, healthcare’s solution to my main problem is something I want to stay away from for as long as possible. And if I wasn’t such a difficult patient (I sometimes call myself a “patient extremist”), I might have gone for the operation. Instead I went to Portugal for a week of intensive neurorehabilitation (see more here and here) and came back with new insights and belief in my own abilities. Portugal gave me a good start and I know I need to keep working on it. I also know that I may still need the operation at some stage but am now convinced that it will be some time yet.
In short: healthcare knows a lot about medicine, but to me health is a bigger concept than medicine and healthcare doesn’t always have the right answers to my questions.
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!
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!
