by Terje Raa (Denmark)
"I'm not drunk! I have Parkinson's - it makes my legs unsteady", "I'm not grumpy! I have Parkinson's - it turned me stoney-faced", “I’m not nervous! I have Parkinson’s – it makes me shake”. These are just some of the slogans on flyers handed out at Sound Lifestyle, a health fair held at The Forum in Copenhagen, during the first weekend in October 2007.
The fair has been running for 22 years - with Parkinson’s participation for the last four - and with an expected 15,000 visitors, it is an ideal opportunity to raise awareness of PD and encourage understanding.
Ironically, the venue for the fair used to be synonymous with an infamous Copenhagen event: the Six Day Race. For almost a week, couples of cyclists would race in an atmosphere of tobacco smoke, beer and blaring music. Not quite the health-conscious event that is Sound Lifestyle! But – perhaps somewhat reassuringly - there is still the occasional rock concert to punctuate the Forum’s new cleaner image.
The Sound Lifestyle fair resembles a huge collection of white bird cages, 180 altogether, their signs more or less visible: Yoga and Meditation, Power Massage, The Unknown's Bookshop, Life Saving, Horoscopes, Heilpraktik, Ayur Veda, and Palm Reading. There are also a number of patient organisations, from coliaki, chronic pain, alcoholism and brain damage to obesity, diabetes, osteoporosis, rheumatism and kidney ailments.
Two local branches of The Danish PD Association decided they should be present at the fair too. They joined forces and were successful in securing a stand. Nearest neighbours are the International Organisation of Good Templars, Animals' Friends and LNS, an umbrella of alternative therapists. On their way to the Parkinson’s stand, visitors are exposed to dream stones and zone therapy, a hearing test followed by craniosacral therapy or a cholesterol test, and when they are exhausted: breathing techniques!
Amongst the noise of all the various health messages being promoted, it was agreed the best way to raise awareness of Parkinson’s and the Danish PD Association was through humour – hence the witty slogans. Each flyer also contains a short mention of dopamine and a reminder to think twice next time you are confronted with shaking hands, slowness and clumsy limbs.
The stand is simple: aluminium chairs and small tables laid with the usual information material and, of course, the new flyers. The slogans are a success. As the flyers exchange hands they produce smiles, even outbursts of laughter and sighs of relief: "Yes, that's true."
From this, it is a simple step for the members supervising the stand to open conversations about the unpredictable world of Parkinson's. They listen and respond to new stories; about people who refrain from being examined; people who mistrust and even neglect their own diagnosis; people who choose isolation, driving friends and family to despair.
All the participating members are Parkinson's patients themselves - for many visitors, this is a welcome opportunity to learn about PD from a patient who is no relation. They are eager to hear each member's own story. "But you don't shake!" is frequently declared, highlighting that many are unaware or refuse to believe that Parkinson's is individual and not everyone shares the same symptoms. Both sides benefit from these discussions, particularly the PD Association member – as dealing with new and unexpected questions provides fresh angles on their own situation.
Several visitors talk about cases of PD within their own families and speculate whether they themselves are likely to also develop the condition. These conversations round off with questions about possible prevention, to which the answers are rather discouraging.
Whilst most visitors praise the stand and its initiative and are eager to chat about the disease, the recruitment of members to the PD Association seems difficult. A folder listing the advantages of membership is a high priority and the members manning the stand kick-start themselves into active recruitment. An elderly workman, still wearing working clothes, needs no hard sell. He rushes in to buy a membership and hurries back to work. His determination is striking: his focus is meeting other people with Parkinson’s.
The stand would hardly receive a medal - it was a clutter at times, material was missing and the members’ T-shirts imprinted with slogans failed to materialize. But none of this affected the visitor contact. The members listened, consoled, explained and confided, before collapsing in an aluminium chair at the end of an exhausting, but successful weekend. The official objective – from misunderstanding to understanding - was launched. Moreover, it is now established in the minds of the Danish PD Associations’ members, ready to be activated again soon.
Even the next campaign could very well contain humour, this time highlighting how hurtful it is to ridicule those who deviate from the norm, when a chronic disease is actually the cause. Ridicule is a less flattering side of Danish humour, an obvious target for a coming campaign.
And should the T-shirts with slogans arrive some day, they can certainly be used despite the delay. Undoubtedly, there will still be reason to protest, "I'm not drunk, I'm not grumpy, and I’m not nervous either". But this mix of humour and provocation may be all it takes to start a dialogue with people to whom Parkinson's could just as well be a town in Russia – and take them from misunderstanding to understanding.
Terje Raa
04 January 2008
Also by Terje Raa
Copenhagen Shakes (13 June 2007)
Counts and Countesses of Copenhagen (15 May 2008)
Budapest Buffet (20 October 2008)
DISCLAIMER
Opinions and views expressed are those of the author(s) and do not necessarily reflect the official policy, position, opinions or recommendations of the EPDA.
