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.
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.
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.