Victory is mine!

2014-08-23 20.42.57On 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!

How to make it stick?

Day 1
Day 1

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
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!

“Run Parkie, run!”

2014-08-20 18.33.10The “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!

Motivation to fight Parkinson’s

2014-08-20 08.30.27I 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!

The Fight Parkinson’s Club

2014-08-20 11.01.23On 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.

Fighting to stay well

SisyphusParkinson’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.