Don’t fence me in

Parkinson’s covers a huge spectrum of symptoms, interventions, attitudes and outcomes. You can’t put us all in the same box.

Zodiac sign:                     Pisces

Chinese year:                  Dragon

Planet:                             Venus

Tipping Point agent:      Connector

Colour me Beautiful:      Spring

Myers–Briggs:                 ENFP

I’m all of these things, and none of them, for this much I know:

• There is no pigeonhole with my name on it.
• I can read maps.
• I look dreadful in salmon pink.
• I know lots of people (Connector) but I also know lots of stuff (Maven).
• I can behave like a Taurus or a Snake if I want to (although Snakes don’t breathe fire, so not quite so much fun as Dragons at parties).

I once asked a guy in a speed networking event if he thought Baskin–Robbins was a good tool for team building. “Of course!” he said, “if they like ice cream!” I meant to say Myers–Briggs (personality profiling). They were two very funny minutes.

New label

Now I have a new label. PD. Parkinson’s Disease. Before the summer of 2019 I was just as guilty as the next person of thinking that it was all about elderly people with tremor and Zimmer frames. Not younger people with racing bikes, managing work and family life with their new unwelcome companion.

Parkinson’s covers a huge spectrum of symptoms, interventions, attitudes and outcomes. Many more flavours than Myers–Briggs or Baskin–Robbins. You can’t put us all in the same box.

Positive deviant

Maybe not having a label is a label in itself? Imagine my delight to discover that PD also stands for Positive Deviant. Over to Wikipedia:

“Positive deviance (PD) is an approach to behavioural and social change based on the observation that in any community there are people whose uncommon but successful behaviours or strategies enable them to find better solutions to a problem than their peers, despite facing similar challenges and having no extra resources or knowledge than their peers. These individuals are referred to as positive deviants.”

Have I found my pigeonhole at last? Positive? Deviant? What’s not to like?

Common themes

I recently completed a detailed survey for Dr Laurie Mischley* and her research team at Bastyr University in Washington state, USA. They are using the model of positive deviance to identify the common ingredients that may help people with Parkinson’s manage their condition and delay disease progression. Topics include symptoms, medication, diet and lifestyle. By pooling answers, they can see things on a group level that might not be visible on an individual level.

The gold standard of medical research is double-blind placebo-controlled trials – to test one variable at a time. But these trials are costly and, as Dr Mischley says:

“You can’t design a placebo for eating a banana.”

“We have this really diverse disease in Parkinson’s, and it’s just not likely we’re going to come up with one single agent that’s going to stop the whole thing. So searching for common themes makes a lot of sense.”

The survey is coming to an end with the last data collection this summer. I’ll await the results with interest.

*Bastyr University (May 2015) Unusual Parkinson’s study seeks to learn from ‘positive deviants’

Play > Don’t fence me in > Bing Crosby

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