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.
I’m sorry to hear about your illness. Do you track all of your treatments or interventions? What else do you track? What applications or devices do you use?
I also suffer from a chronic affliction that doctors have so far been unable to alleviate. Mine some kind of autoimmune disorder that results in psoriasis, acne, digestive issues, fatigue and severe depression.
I also took a QS approach and started tracking everything to figure out what treatments actually had long term overall benefit and to identify potential trigger factors exacerbating my symptoms.
I couldn’t find an easy way to integrate the data from the different sources and mine for correlations, so I’m trying to build a site to do that called QuantiModo.
I’d love to talk more and see if we can help you figure out the most effective and efficient way to minimize your symptoms.
Feel free to call me at 618-391-0002 anytime.
Sorry for not responding sooner. I do track a lot of different things: treatments, interventions, sleep, activity, etc and I use different devices: Jawbone24, Shine, my iPhone etc. And in the same way you did, I soon realised that I need to integrate the data from all the different sources to be able to make sense of it. I tried to sign up to your site but couldn’t log in once I had registered. Could you check it for me?
Well, conventional wisdom in the sports community has it that the lower your heart rate overall, the less your heart has ton pump and thus the longer you live. To me this contains a hidden assumption that we were all given a certain amount of heart beats at birth and non more, which I think is wrong. Yet since the heart is about the only organ that never really rests at all (and has no known cancer, unlike liver, lungs and every other organ …) a lower resting rate is certainly desirable. But the “natural” heart rate is super-imposed by a lot of factors. I once talked with a national speed ice skating coach in the seventies and he told me he had his equipe each take their pulse BEFORE stirring in bed in the morning. They had low rates of 38 to 39 (!) and if it was anywhere above 40, he ordered them to stay in bed – it was a flue or so in the making. Maybe you can spot similar patterns when using the band regularly.