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.

Chronic disease and self-tracking – part 1: heart rate

The quantified self Counting every moment

Image from the article “The quantified self Counting every moment”, The Economist March 3rd 2012 (http://www.economist.com/node/21548493)

Having a chronic disease is lifelong learning, even if you don’t want to. Living with a progressive disease is a challenge on the best of days and if you add the twists and turns that an ordinary life comes with… Well, let’s just say it helps if you are solution-focussed and creative…

Self-tracking is, in my opinion, the most powerful weapon I can wish for in my battle against Parkinson’s disease (PD) and I will explain why.

I see my neurologist once or twice a year, about half-an-hour every time. That is one hour per year, and the rest of the year’s 8 765 hours, I spend in selfcare.  This means that I am directly “exposed” to healthcare’s practises and clinical guidelines for my PD during one hour per year. And it is only during this one hour that my neurologist can assess my symptoms, observe my condition and evaluate my status. It is also during this one hour per year that my treatment is being prescribed, different medications and other interventions.

But it is during the rest of the year’s 8 765 hours, that I implement the treatment. Because, let’s be honest, my neurologist doesn’t even know if I take the medications he prescribes. And, probably most important, it is during the 8 765 hours in selfcare that I can observe the effects of the treatment. And this is where self-tracking comes in.

As most of my readers probably know, I have been involved in the Quantified Self (QS) community for a few years. I have spoken at all three Quantified Self Europe conferences and my talk from the first one, in 2011, is mentioned in this article from The Economist.

I hope that the QS community will be able to help me understand my latest “health challenge”. I bought a pulse band last week because I have for a long time wanted to investigate my heart function, mostly out of curiosity. I have worn it on and off for a few days now and have found that my resting heart rate is very high. Sitting here writing this, my HR is in the 90s… I wore the band to a 5 km evening walk yesterday and you can see the result below.

Screenshot 2014-07-30 10.22.50 crop

My max HR during the walk was 147 BPM and the average was 118. The lowest HR was 86 and that was during a period of rest around 55 mins in (my back was cramping a bit).

I also wore the pulse band during last night’s sleep, see below. I accidentally paused the session for a few hours but I think it is probably representative enough. The sharp increase to 102 BPM just at the end is when I got out of bed.

Screenshot 2014-07-30 09.42.52 crop sleep

My lowest HR during last night was 66 BPM and the average was 77. The peaks at approx 01:50 hrs and 03:20 hrs are probably the result of me waking up and turning over in bed.

For me this raises a number of questions, some of which are:

  • Is it PD-related or not? – There is a connection between PD and autonomous nervous system dysfunction, so it could be. But then again, maybe it doesn’t matter if it’s PD-related?
  • Is it connected to my thyroid hormone replacement therapy? It definitely could be, which is why I have made an appointment for checking my T3 and T4 values.
  • Is a high RHR dangerous?

I would love to hear what you think about this.

We need a “Copernican Revolution” in healthcare!

Motion of Sun, Earth, and Mars according to heliocentrism (left) and to geocentrism (right), before the Copernican-Galilean-Newtonian revolution. Note the retrograde motion of Mars on the right. Yellow dot, Sun; blue, Earth; red, Mars. (In order to get a smooth animation, it is assumed that the period of revolution of Mars is exactly 2 years, instead of the actual value, 1.88 years). The orbits are assumed to be circular, in the heliocentric case. (From: http://en.wikipedia.org/wiki/Copernican_Revolution)

Motion of Sun, Earth, and Mars according to heliocentrism (left) and to geocentrism (right), before the Copernican-Galilean-Newtonian revolution. Note the retrograde motion of Mars on the right. Yellow dot, Sun; blue, Earth; red, Mars.
(In order to get a smooth animation, it is assumed that the period of revolution of Mars is exactly 2 years, instead of the actual value, 1.88 years). The orbits are assumed to be circular, in the heliocentric case. (From: http://en.wikipedia.org/wiki/Copernican_Revolution)

I share my birthday with someone very famous, I would say that almost everybody in the world know his name. At least we all know his work or rather, the result of his work. Nicolaus Copernicus was born 498 years ahead of me, to the day, and of course his work fundamentally changed the way we view the world, literally. I think our similarities start and end with both being born on the 19th of February.

Copernicus was born as the fourth child to a Preussian merchant and his wife and he truly was a child of the Renaissance. He had a doctorate in Canon law and was also a physician, astronomer, classics scholar, translator, governor, diplomat and economist (Source: http://en.wikipedia.org/wiki/Nicolaus_Copernicus).

Around the time of 1532, Copernicus’ work had resulted in a manuscript titled De revolutionibus orbium coelestium (On the Revolutions of the Heavenly Spheres), where he challenged the ancient geocentric view of the universe.

The work of Copernicus was further developed by Danish nobleman and astronomer Tycho Brahe (known to have died as a result of refusing to violate etiquette by leaving a banquet to go pee), German scientist Johannes Kepler and Italian scientist Galilei Galileo. The book Philosophiæ Naturalis Principia Mathematica, Latin for “Mathematical Principles of Natural Philosophy“, often referred to as simply the Principia by English mathematician and sir Isaac Newton confirmed the hypothesis of Copernicus a “mere” 155 years after it was postulated.

You are probably wondering what this unwarranted history lesson has to do with healthcare? Well, in my view, healthcare is in dire need of a Copernican Revolution. We need to go from the current healthcare-centric paradigm of healthcare to the natural and, to me, obvious patient-centric paradigm. “But”, I hear you say, “surely healthcare is already and has always been putting the patient in the centre of attention”. Sure, but “the centre of attention” is not the same as being patient-centric. Let me give you an example:

A friend of mine spent some time in the hospital recently. He also has Parkinson’s and since he took ill rather suddenly, he didn’t have his medications with him to the hospital. If you know something about Parkinson’s, you know that our medications are what keeps us going, keeps us moving, and without it, we would not be able to function very well. My friend had notified the nurses at the ward about his problem and told them that he needed to have his medications as soon as possible. They told him that they would get him what he needed when the hospital pharmacy opened at 10 o’clock the next morning. The next morning came and my friend reminded the nurses of his need. He was told that they would get his medications in due time. My friend was becoming increasingly rigid and he tried to tell the nurses that he really needed his medications. At this point, he was probably recognised as “another one of those difficult patients who think they know our job better than we do” and all the while he was getting less and less able to move by the minute. When a nurse finally arrived with the medication he needed, she had to put them in his mouth as he was no longer able to do it himself. He told her to come back in half an hour and she wondered if he would really need more medication that soon. No, he said, I want you to see the effect these drugs have on me. She came back with a colleague 45 minutes later and the patient she had left not even able to raise his hand to his mouth, was now sitting up straight in a chair, cheerfully reading a newspaper. He saw her surprise and said “Can you see what the medications do for me? Do you understand now why I need my pills when I say I need them and not when it suits your schedule?”.

The transition from a healthcare-centric system to a patient-centric one will not be easy, no more than the transition to a heliocentric view of the world was.

But I sincerely hope that we won’t have to wait 155 years for it to be completed!