The 2017 group leader meeting: Informative, friendly, emotional
Author
Irina Niepel, as published in Alpha1 Journal 2/2017
Storm Xavier couldn't stop us "Alphas": the journey was difficult, with layovers, rebookings, patient waiting, ticket refunds, etc., but on Friday afternoon, we were still able to see many familiar faces from all corners of the country in the lobby of the Nuremberg "Park Inn" hotel. Exactly one year had passed since the last meeting of group leaders in Hanover, and many were looking forward to seeing each other again. Back then, my husband Alexander and I attended for the first time because he wanted to take over the group leadership in Munich. There was no group yet, no experience, no contacts, but a lot of uncertainty and disappointment in the search for like-minded people. Now, we looked back on a good year with our self-help group and wanted to hear from the others how they were doing, how they organized their meetings, what they did to attract new members, and what tricks they used to secure competent speakers for informational events in their groups.
On Saturday, after a hearty breakfast, we set off promptly at 9 a.m. – not 9:30 a.m., and even extra wine for the chairwoman couldn't change that.
The workday wasn't meant to be a rigid series of presentations, with Marion moderating from the front like a school teacher. Instead, it became a forum where everyone could share their experiences from the past year and express their concerns. A number of similar problems emerged: all the group leaders would welcome more interest from the self-help group members – and newcomers – as some past meetings had been quite small. The difficulties in finding suitable speakers for specialist presentations within the self-help group were also discussed.
The moving account by Andrea Kleinert about her transplant experience was deeply emotional. Long waits, being reassigned, an unexpected deterioration in her health, isolation due to infections after the procedure, minimal contact with the outside world, doubt and hope – she endured it all and is now more energetic and full of life than ever. Fighting back tears, she thanked everyone who made her second chance at life possible. Without pathos or exaggeration, there's no other way to describe this medical miracle.
The beauty of this exchange, in my view, lies in its friendly, informal atmosphere: you get firsthand information, but it's entirely up to each individual whether they decide for or against a transplant, whether they live a vegan lifestyle or enjoy a juicy steak, whether they actively seek new members or are simply there for newcomers. Everyone listens to different opinions, gathers suggestions and fresh ideas for their own group's work. It's also important to keep in mind what we've known for some time: the disease progresses differently in everyone. Not every ointment will help you with skin irritations, and not every spray will make you breathe more freely. Since all group leaders also represent Alpha1 Germany e.V., it was also important at the meeting to discuss and share the "rules of engagement" regarding pharmaceutical contacts and Facebook presence.
Furthermore, the Austrian colleagues Christa and Elfi reported on their group work in Styria and Carinthia, which included many excursions and cozy get-togethers.
And what would the Alphas be without sport? Michaela Frisch from the Espan Clinic, who keeps the Alphas up-to-date on pulmonary exercise and movement opportunities in everyday life, spoke this time about rehabilitation for lung patients, what to consider (don't use the term "spa" and set clearly defined goals! And when applying, specify the rehabilitation clinic you want to go to, not just the location), how to get the most out of such stays, and what characterizes a good rehabilitation clinic.
Traditionally, the program for the self-help group leaders' meetings is complemented by informative bus tours through the host city. The city tour of the Franconian metropolis took us past the city fortifications, the old tollhouse, the uniquely preserved Holy Spirit Hospital, and the Imperial Castle to the Beautiful Fountain. After a sightseeing tour, we settled down at the "Bratwurst Röslein" (Sausage Rose) in its immediate vicinity. In the world's largest bratwurst restaurant, we were able to bring the eventful day to a pleasant close with a beer or wine and hearty Franconian specialties.
And on the way to the hotel, we saw the market square, also known as the Christkindlesmarkt, which attracts visitors from all over the world to Nuremberg. The "Alphas" were indeed a fast bunch: we were at the Nuremberg Christkindlesmarkt, just eight weeks too early…
Irina Niepel
