Counts and Countesses of Copenhagen

"Why are you standing here?" a lady asks with a touch of accusation in her voice. I have forgotten why, but I do remember I'm busy handing out flyers and postcards on the Hojbro Square in Copenhagen, the day before World Parkinson's Disease Day. The poor knowledge and prejudice concerning this condition - which often causes me paranoia and distress - does not cross my mind now. I'm mentally blocked.

Handsome young people hurry past, enough to restart my memory and tongue, while my thoughts wander elsewhere. The lady's direct manner has given us food for thought. Standing here with Parkinson's and a stack of colorful pamphlets, doesn't necessarily make us interesting. What we need is a little toolbox - filled with understandable messages and straightforward strategies for establishing contact.

Drama is never far away when the Danish PD Association is out and about. Ebba and Else, the local chairperson and her deputy, have obtained a permit to set up a table with information material from 10.00 to 15.00 o'clock. Whereupon they arrive with a huge tent in the shape of a pavilion, but the white wonder makes no impression on the woman in the hot-dog stand. A uniformed lady from the Environmental Department reprimands Ebba and Else in their absence, showing her solidarity with a disguised smile.

When the sun is shining on the Hojbro Square, like today, people approach the cafés and the Stork Fountain on the adjacent square of Amagertorv, where we are not allowed to set foot. Others move toward the waters of Gammel Strand and Frederiksholm Kanal, sensing the presence of history as they pass Bishop Abasalon, the founder of Copenhagen, on his rearing horse. Now that we are here, we ought to knock on Folketinget's door to make ourselves heard and seen, highly necessary as the Parliament tends to favor other major diseases.

The Power of Bicycles

A tent surrounded by parked bikes turns out to be a perfect device. The act of locking and unlocking a bike requires the owner to stand still a few seconds, long enough for us to approach them with sweets and postcards, followed by flyers and a short chat. Foreigners eye our gifts disbelievingly, they soon open up though and take us far away - via the new city of Orestad to Brazil, Istanbul, Islamabad and India. One traveller, Selma from Istanbul, keeps coming back to our tent to rest her tired legs and drink another cup of coffee, while displaying her latest portrait drawings.

We are invited into the world of natural medicine and presented with sensations. A lady sporting a strong accent and a husband with Parkinson's takes us to India, where the old health system of Ayurveda referred to and treated "Kampavata", known today as Parkinson's. The sensational thing is that an Indian doctor living today, should be capable of curing this disease. The lady has been chasing him for years - without success, while her husband gets worse and their friends fall away.

That special doctor suddenly comes to our minds - as an Oriental looking man approaches us, erect and with style. He is wearing a white blouse, grey bag-trousers and a blue turban adorned with a precious stone, holding a long stick in one hand and in the other a devoted dog. The man asks what kind of pots we use at home, whether they are of aluminium. We are exposed to aluminium oxide, which is simply the cause of Parkinson's. The man claims to be a professor of natural medicine in Berlin. Tomorrow, we will confront Parkinson researchers with our new insight.

Number One Hospital

Once a year, people with Parkinson's approach the hospital with joy - to be fed, entertained, exercised, enlightened and spoiled, accompanied by a former princess, Countess Alexandra, our patroness. On this particular day, we are all treated like counts and countesses, an opportunity too good to be missed. The grand marking of World PD Day has in two years become a tradition that we embrace enthusiastically. The Association can anticipate a collective membership withdrawal if they discontinue this annual event.

It's an experience to sit high up in a huge lecture hall, looking down at sleepy heads constantly nodding off. Today's programme and an exercise tool welcome us. The resigning national chairperson is unusually high-spirited. So is the host, the manager of Denmark's foremost hospital, Rigshospitalet, who expresses his thanks for the financial support of their research. Breaking the Parkinson code would be ideal at this specific point, characterized by a shortage of neurologists and cutbacks versus the number of chronically ill. Worries aside, we must not forget James Parkinson's 253-year anniversary - congratulations!

Three experts from the town of Roskilde - a neurologist, a nurse and a neuro-psychologist - take a break from their interdisciplinary universe, where they teach hospital staff, patients and closest relatives, giving everyone a better understanding of Parkinson's and developing their competence. The project is really extensive - from depression to voice training, home visits, sheets to glide in and zips with a helping ring. Their Copenhagen colleagues hopefully let themselves be inspired by Roskilde's "Strategies for good treatment".

Cha-cha-cha, cautious dance steps can be heard in the lecture hall. The dance teacher from TV seems unaware that the audience could manage to stand on their feet. After 20 minutes he gives up and dances out together with an acrobatic dancing couple. Little mini-pigs from Arhus come dancing in, vitalized by two researchers from the Faculty of Agricultural Sciences and the University of Arhus. Just because their brains are similar to ours, the poor pigs are exposed to a complicated transfer of genes in order to catch Parkinson's. The aim of the researchers is to monitor the disease progression and if possible delay it.

Balloon Ascent

Our cognitive abilities, or the lack of them, are discussed broadly these days. To compensate for a dissolving inner structure perhaps, today's last theme is the Structure Reform - how the "chronics" are effected by a recent restructuring of the public sector into 5 regions and 98 municipalities. Health policy is more centralized now, focusing on eight major diseases, not including Parkinson's. Therefore, it's vital for the PD Association to take part in new health agreements, among them the distribution of medical specialities between hospitals. These innovations are not ignored by our patroness - Countess Alexandra mounts the podium and speaks with eloquence.

For the rest of us, the one-day status as counts and countesses is over. Our fine titles disappear into the blue together with red and white balloons filled with hopes and wishes. We did get a boost though, and to keep up the good spirits, we'd like to suggest a closer dialogue with those in charge of our Association - give us some influence on the planning of next year's birthday program. After all, two of us still have a secret to present - aluminium oxide.

This festive day puts yesterday's campaign into perspective as well. It was a bit unstructured - we enjoyed ourselves in a cautious, rather passive atmosphere. The idea of a toolbox pops up again. Both this and previous campaigns suggest what its contents should be - crystal-clear messages, strategies for establishing contact, answers to frequently asked questions, registration forms including a section on the advantages of membership.