All about Guillain-Barré syndrome: denmarks first nationwide meeting for GBS victims and their families, 2002

This first national GBS rally was held on 26 may 2002 at 10.00 am, at Ringe. The purpose of the rally was to try to establish a group, disseminate information, meet patients and their families, and to have a good time together.

The participants arrived from various areas of Denmark and Germany, and included a couple of health care providers.

Welcome: The proceedings began with a song. (Singing at such occasions is a typical Danish tradition).

Sharon, who had arranged this event, Denmarks first national GBS rally, welcomed everybody warmly for coming. She presented herself and her connection to GBS: She has a family relative with CIDP.
Sharon reported on the conference in England, praising the arrangements and programme. We, in Denmark, have a long way to go as regards setting up a professionally-run support group and establishing the level of knowledge available there! She also went into the pros and cons of the American GBS foundation that she is the Danish Liaison for.

Presentations: The participants enjoyed sharing their stories and backgrounds. It was fun to meet each other, and very interesting to hear how differently GBS affects each patient. Some had made full recoveries, others had not. But common to all the participants was the hope that we could help each other and others in the same situation.

Programme: Sharon told the participants about her various initiatives for the dissemination of information. Some are in use while others are being considered for implementation. Kristian and Charlotte reported on the initiatives they assist in. These were discussed, and among other things, it was found that there was no interest in forming a danish GBS Support Group.

Picnic lunches were enjoyed outdoors, the weather was fantastic - sunshine and warmth in May!
We then continued with the speakers items. Jørgen and Peters contributions to the day's programme were informative and humourous, and very well-received.
The projected activities for the next few months were then listed and volunteers found to carry them out. Sharon is to be informed regularly as to progress, as she is the coordinator.

Jørgen Bak began his item"It's perfectly okay to hit somebody who's smaller than yourself", with a beautiful piece of music played on his guitar.
The somewhat cryptic title refers to the fact that the organism causing GBS (yet to be discovered) is probably very tiny, and getting through the nightmare it causes needs vast amounts of grit and determination.

Jørgen explained why and how patients are treated at the intensive ward he heads. He spent a great deal of time on the subject of ventilators, which in his experience can be very traumatic for patients. He had brought along some of the equipment used in tracheostomies, and used this to illustrate the process.
This was very informative! The participants are all part of the informal network, and need to be able to reassure the patients and their families who contact us. Besides, Jørgen wanted to detraumatise any of the participants who'd been trached as part of their treatment, by explaining things carefully and clearly.

Jørgen explained further that working at the intensive ward was extremely challenging, but among the rewards the personnel enjoyed most were visits from ex-patients who were now leading happy lives again.

Among the most important tips he gave us: make sure the patient is kept oriented with daily life. Encourage personnel, family and visitors to write about the course of the syndrome in a diary, as this is very useful to the patient later on. And last, but not least: Humour is the best medicine!!

Peter Nørlund told the participants about his background and dreams of becoming a farmer. GBS put paid to that - he is one of those who suffer from a great deal of after-symptoms.

He too mentioned the importance of humour in treating patients. In his experience, vent patients, perhaps even patients in general became selfish easily - everybody is sympathetic and vent patients are waited on hand and foot...

Peter is invited regularly to a local physiotherapy school to speak about his experience to the students there. He found talking about it very therapeutic. He also regularly visits the intensive ward of the hospital he was admitted to - Jørgen Baks ward, by the way - even though it's been many years since he was discharged. As he said, "The people who saved my life work there".

Conclusion: After discussing the activities to be embarked upon or continued, we concluded with a final song.
The rally was generally agreed to have been a success and after a big thank-you to Sharon for organising it, it was agreed that a second one should be held in a few months.

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