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.


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