All posts by SaraRiggare

1 vs 8,765


The image can be downloaded from:

I see my neurologist twice a year, about half an hour every time. That’s one hour per year in healthcare for my Parkinson’s disease. During the same year I spend 8,765 hours in selfcare, applying my knowledge and experience together with what I get from my neurologist to manage a difficult condition as best I can. Only during the one hour per year (the red circle in the image to the left) am I in direct contact with neurological specialty care and its clinical practise and guidelines.

And it’s also during this one hour that my condition is evaluated by my neurologist and my treatment is prescribed. But it’s during the 8,765 hours of selfcare (the blue circles in the image, and yes, there are 8,765 blue circles, I am that nerdy :) ) that the I put my treatment into action. I take 6 prescription drugs, 6 times a day, in 5 different combinations, with 6 different time intervals. Because let’s face it, my doctor doesn’t even know if I take my medications or not.

2014-08-24 19.38.14

It is also during my 8,765 hours of selfcare that I can observe the effects of my treatment. And what if I could register my observations in a systematic way and bring to my next neurologists’ visit?

Guess what? I already am!

I am not saying I want more time in healthcare. I really don’t think I need more time with my neurologist. However, I am saying that healthcare needs to acknowledge the work we patients do in selfcare and also start working to make use of our observations for their own knowledge.

Just imagine what we could achieve if we start working together – as equals with different but complementary areas of expertise!

Healthcare or health?

ThoreauA google search for “What is health?” just resulted in approximately 23 200 000 hits and I think that the number of different answers to the question is far greater still. The quote to the left is one of my favourite phrases about health and it is by the American 19th century author, poet, philosopher and much more, Henry David Thoreau. His words really resonates with me, as a person living with a difficult chronic progressive disease, health is not something I take for granted . But, and it is a big but, I also know that I have everything to gain from being an active participant rather than a passive bystander in the “battle” of my health.

In Parkinson’s, our neurologists assess our health using an almost infinite number of different scales; generic scales like EQ-5D, SF-36, EuroQoL or specific like UPDRS, PDQ-39 and many many more. To my mind those scales have very little to do with my own understanding of health. They are probably useful within healthcare, when you want to compare treatment results across clinics or make health economic evaluations. But do they REALLY measure health?

My personal definition of health is to not allow my condition to limit my life while at the same time not take unnecessary risks.

Given that my most troublesome symptom of Parkinson’s is freezing-of-gait, a strange phenomenon causing my feet to literally seem like they are stuck to the ground (see film clip below), especially in stressful situations, like for example crossing a busy street, you can see where the potential risks would come in.

Of course my definition is pretty much impossible to quantify in an objective manner but nevertheless, this is the way I want to live my life. And healthcare is aware of the risks associated with freezing-of-gait. In fact, freezing-of-gait is seen as a serious symptom, due to the obvious risk of falling and therefore is given a lot of attention from our neurologists. And they have treatments to offer for “advanced Parkinson’s disease”, which this symptom can be one of the signs of. My neurologist has told me that research has shown that with my combination of symptoms, I am likely to be a candidate for deep brain stimulation (DBS), a surgical procedure where electrodes are placed deep into the brain and connected to a kind of “brain pacemaker” placed under your collar bone. Don’t get me wrong, I have plenty of friends who have had this procedure with very good results and I am very happy that advanced treatments are available. But I am determined to make sure I have tried everything else in my powers before I let someone poke my brain while I’m awake (yes, the operation is performed with the patient awake to ensure that the desired effect is achieved  from the electrodes…).

In summary, healthcare’s solution to my main problem is something I want to stay away from for as long as possible. And if I wasn’t such a difficult patient (I sometimes call myself a “patient extremist”), I might have gone for the operation. Instead I went to Portugal for a week of intensive neurorehabilitation (see more here and here) and came back with new insights and belief in my own abilities. Portugal gave me a good start and I know I need to keep working on it. I also know that I may still need the operation at some stage but am now convinced that it will be some time yet.

In short: healthcare knows a lot about medicine, but to me health is a bigger concept than medicine and healthcare doesn’t always have the right answers to my questions.

2014-08-23 20.42.57

Victory is mine!

2014-08-23 20.42.57On our 6th day at the centre for neurorehabilitation in Portugal, CNS, it was time for evaluation and reflection. How much can you actually achieve in just 5 days of training? We were about to find out…

Josefa, the Portuguese physiotherapist who loves to complicate things (but only if it’s useful), put us on the balance evaluation pressure plate, first me and then Jon.  I had noticed Jon’s posture really improve over the course of the week and he also seemed to have less tremor. On the day before, Portuguese television had come to the centre for interviewing Josefa and her colleagues and they also interviewed Jon and me. I think that Jon really enjoyed being able to dazzle the beautiful interviewer with his impressive knowledge of neuroscience.

Josefa did not expect our results to have changed significantly from only 5 days of training so she was very surprised when both Jon and I showed a marked improvement in the different balance tests.

For the afternoon we were going into Lisbon for some sightseeing and shopping. But as usual, Josefa had an additional agenda. She wanted to put my newfound knowledge and anti-freezing strategies to the test in the busy streets of the capital with the unpredictable crowds and ruthless cars. Her boss, neurologist professor doctor Joaquim Ferreira looked slightly worried when she told him but he decided it was at least safer than in Rome.

But first, the very last training session for this trip and once again Josefa was able to surpass herself when complicating things. You may recall from my previous posts (here, here, here and here), that she had already made me walk on treadmill with my feet strapped to the treadmill with rubber bands and also walking in the pool with flippers on my feet. So what would be the logical next step you ask?

Yes, of course: walking on the treadmill with flippers!

When walking on the treadmill like some sort of amphibian, something really clicked… A huge lightbulb moment! And for those of you who do not have Parkinson’s, this will probably sound really stupid and self-evident, but I realised that if I use my abdominal muscles when I walk, I don’t have to jerk and fight to make my feet go forward… And what’s more, it felt like the freezing was more under control. Hmmmmm…… interesting…..

And in Lisbon, I put my new hypothesis to the test. I was very careful to activate my abs on every step and it felt REALLY good. I tried manoeuvring crowds and going in narrow passages, something that would have had me stopping dead in my tracks on one foot, trying to find the ground with the other only one week earlier. And it went amazingly well! Josefa was almost as exhilarated as I was and Jon tried masking his happiness for my progress by pretending to be disappointed he wouldn’t be able to make me freeze by startling me any longer.

We celebrated our extremely intense week and all our successes at a wonderful restaurant and watched the sun set in the Atlantic. What a week!

Thank you Josefa, Alice, Verónica, Francisco, Daniela, Pedro, Mariana, Rita, Rita, Rita, Joao and all the rest of you wonderful people at CNS! I will be back!