If you’re reading this, I assume that you know what PD is, or Parkinson’s disease, as the unabbreviated form reads. I assume that you are familiar with the symptoms and signs of Parkinson’s, either because you, like me, have been diagnosed with it yourself, or because you care for someone with Parkinson’s, in a professional capacity or as a family member or friend.
The other part of the title: “self-tracking” is probably less familiar, even though I am sure that some of you readers have some sort of perception of what “self-tracking” might entail. I am guessing that most of you then think of gadgets and devices, cool-looking technology, often used by ultra-runners, long-distance cyclists and other people seldom associated with Parkinson’s or other chronic conditions (yes, Alex Flynn, I know there are exceptions to that rule 🙂 ). I will not pretend that I don’t appreciate technology, anyone who knows me even slightly would immediately call my bluff. I’ll be honest: I LOVE gadgets, devices, technology in every form! But, to me, self-tracking is so much more than technology!
Self-tracking is, in my opinion, the most powerful weapon I can wish for in my battle against Parkinson’s 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. I am sure it is the same way for a lot of you out there as well. This means that I am directly in contact with healthcare’s practises and clinical guidelines for my Parkinson’s during no more than one hour per year. And it is only during this one hour that my neurologist can assess my symptoms, observe how my condition progresses 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. But, 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.
In my opinion, self-tracking is a very wide concept. It involves any and all activities where you observe yourself and any effect you might or might not have from any activity, treatment or similar. For example if you find that something you eat doesn’t quite agree with you, you are likely to make a mental note and the next time you are offered the same food, you will probably decline. Self-tracking can also be done using technology, such as a scale. Yes, of course weighing yourself can be regarded as self-tracking.
The U.S. based organisation The Pew Research Center’s Internet & American Life Project did a study in 2012 called “Tracking for Health” (http://www.pewinternet.org/2013/01/28/tracking-for-health/). They found that 69% of adults in the U.S. kept track of at least one health indicator, for example weight, diet, exercise routine or symptom. The study also shows that most people do not use any technology to self-track, most people track in their head and if a tool is used, the most common is actually using pen and paper. Not very high-tech, right?
So, why do people self-track? Why go through the trouble? Again, Pew Research found in their study that 63% of the trackers stated that self-tracking in some way had helped them with health issues.
The same is true for the trackers living with one or more chronic conditions, but to a higher degree, as many as 76% of the trackers with chronic conditions claim that the tracking has done at least one of the following: affected their overall approach to maintaining their health, led them to ask a doctor new questions or seek a second opinion, or affected a decision on how to treat an illness or a condition.
I didn’t know all this when I started to self-track. In fact, I didn’t even know that there was a word for what I did. With my engineering background, I just thought it seemed to make sense to try to understand the in- and out-going parameters of the dynamic bioreactor that is me. But where to start? Which of the gazillion charming and appealing symptoms or side effects of PD should I try to track first? Well, that is the million dollar question, isn’t it? And since PD is a very individual disease, the answer might be different for all of us. Also our individual situations is probably very different. I am sensitive to Levodopa, so I take a very low dose and still get a good effect.
That’s why they call it self-tracking, it’s about finding your own best way to deal with your situation, condition, what-ever-ition!Please let me know what you track! Comment below!
Take home messages:
- Self-tracking is my most powerful weapon against PD!
- Find your way!
- Don’t track too much!
Here are a few films describing different aspects of my self-tracking. Let me know what you track in the comments!
From BBC Radio 4, “Patients doing it for themselves”:
http://www.bbc.co.uk/programmes/b04grspl
From Quantified Self Europe 2014:
From Stanford Medicine X 2013:
Sara,
Great site!
Your point about the benefits of proactivity is a good one.
I’ve gone down a similar path to yours: on-line side to side tap test, linked to a database, PDMeasure; continuous monitoring of skin conductivity using an Arduino board etc.. I’ve also started to look at transcranial direct current stimulation.
John
Thank you John,
Very interesting! We should talk!
Sara
I am a disabled primary-care physician with advanced Parkinson disease, with dyskinesias and not a candidate for DBS. Even though I have the ability to self-prescribe, and I read the PD literature daily, I see both of my neurologists at least 4 times per year for each. My general neurologist knows me the best over 15 years, and I also see an academic research movement disorders sub-specialist. Self-tracking is great and very important, but it cannot take the place of frequent contact and guidance from your neurologist. Any patient with questions, problems or uncertainties about any aspect of PD should make an appointment with their neurologist and not wait 6 months or even 1 week. If you are in an HMO, demand to see your neurologist. You have that right. David L. Keller, MD, FACP
Thank you David for your comment, it sounds like you have extensive experience from both sides of the clinical visit. Your advice is appreciated, probably especially in the US. The situation with healthcare systems in Sweden, where I am, and many other countries is very different. I do have a very fruitful working relationship with my neurologist but it is highly unlikely that I would be able to get 4 yearly visits with him.
Sara, thank you for making your excellent website available to Americans. May I ask why you cannot get an appointment with your neurologist whenever you decide you require one? Socialist medical systems are not immune to denial of care, as we see here in the USA in commercial HMO settings, where profits are dependent on low expenditures on care. Ironically, our Socialist medical care system, “Medicare” is quite generous; for example, Medicare pays for an appointment whenever the patient or the doctor believes an appointment is needed. This wonderful system, which has been working well since 1965, is right now being replaced with a new paradigm called “MACRA”, which will incentivize denial of care. Qu’elle domage.