About wild ice climbers, lei-lei, hop varieties and a little bit of Alpha…

Irina Niepel, SHG Munich, as published in Alpha1-Journal 1-2019

My husband Alexander, a self-help group leader in Munich, and I had the pleasure of experiencing for the second time just how much you can see, learn, and participate in in less than three days when your hosts are lively Austrian Alphas. This time, the Austrian group leaders met in Villach, a carnival stronghold. Ella's program, as always, was packed and clearly structured, meticulously prepared, and smoothly moderated. Discussions on serious topics alternated with uproarious laughter, and inspiring presentations on professional subjects were followed by convivial gatherings filled with good humor and wine.

We didn't start with wine, however, but... with beer. More precisely, with a very exciting and personalized tour of the Villach Brewery, a member of Brauunion Austria AG under Dutch management, with a growing export share to Italy, Slovenia, and Croatia. On Friday afternoon, we met at the beautiful Holiday Inn Hotel, situated directly on the banks of the Drava River and surrounded by a magnificent mountain landscape. Just a few minutes' walk away is where the famous Carinthian beer is brewed. Wearing neon yellow vests, we toured the brewery grounds and experienced everything firsthand: from bottling, hop and malt selection, and the fermentation process with bottom-fermenting yeast, to tasting the fresh Villach product. After smelling the spelt malt, grinding hop pellets, and feeling the fermentation processes with our bare hands at the brewing kettle, it was time to experience the Villach Brewery's products on our palates. Hearty Carinthian specialties were the perfect accompaniment.

On Carnival Saturday, work was underway in the heart of Villach, the Austrian carnival capital. I suspect we were the only ones doing so. Lei-Lei! For those unfamiliar with this local Austrian carnival greeting: Loud music, masked revelers, and a boisterous atmosphere outside; focused work, brainstorming, and lively discussions inside. It sounds like a lot of discipline and perseverance, but it really wasn't. True to the saying, "Business before pleasure," we started Saturday morning with a preview of 2019. Here's a brief summary of upcoming events for those interested:

• July 6-7 – Smovey Workshop in Western Austria
• October 12-13 – Alpha Care with Andrea Schuh and Gabi Liebl
• November 16, 2019 Workshop with Prim. Dr. Wurzinger in Enzenbach

Proposals and changes regarding finances and billing, reports from the individual self-help groups, and the 2018 annual review followed. My husband gave a detailed report on the activities of Alpha1 Germany. His presentation also included some personal experiences from our family concerning home-based opioid substitution therapy and the Munich self-help group. However, the highlights and surprises of the day were yet to come…

Jasna Pejčak from Slovenia, who received a lung transplant in 2017 and had already forged many friendships with the Austrian Alphas, left an unforgettable impression. For this red-haired, cosmopolitan extreme athlete, giving up was, according to her own account, never an option. Even when the Alpha-1 antitrypsin deficiency, diagnosed in 2003, first prevented her from ice climbing and mountaineering, and then suddenly from leading a normal everyday life, Jasna never doubted that everything would be alright again. Her husband had to be quite resourceful to obtain the necessary medication, which meant traveling to Israel and importing it himself. She spent 14 months on the transplant list, anxiously awaiting the call every single day. When it finally came, Jasna was in very poor health. That's why her grandson was so happy when his grandmother was taken to Vienna by ambulance, because he hoped she would return the next day completely fit and healthy, so they could play football together again after a long break. With a donor lung and after a seven-week hospital stay, first in Vienna and then in Ljubljana, Jasna resumed her training, was climbing again three months later, and is now participating in climbing competitions once more. She and her husband Andrej are unstoppable in their electric car. In Slovenia, with a total population of around 2 million, there is neither an Alpha1 association nor a self-help group. "I am Alpha1 Slovenia," Jasna replied when I asked about the local association. However, the path to diagnosis in such a small country as Slovenia was quite short: three months after the first symptoms appeared, Jasna knew what she had: Alpha-1 antitrypsin deficiency. Slovenia's only lung clinic, located near Ljubljana, also shortens the search and the ordeal for Slovenian patients. Jasna, full of life and sure to have many more successful ice climbing seasons ahead of her, is truly inspiring. Her zest for life is contagious. In her final presentation slide, Jasna listed her five personal pillars that help her make her life beautiful, exciting, and simply worth living: a positive attitude, social support, conventional medicine, activity, and nutrition. "Eat pasta! It gives you strength. And a glass of red wine with it!" Thank you, Jasna!

Many invited speakers from Alpha1 Austria have become good friends of the association over time, and they are always happy to return with new presentations on various topics. For example, Dr. Thomas J. Nagy, a systemic coach and health scientist, is already known to the Austrian Alphas as an information day moderator, resilience trainer, and psychosocial counselor. At this group leader meeting, Dr. Nagy, with the support of his wife, led us in a fun team game to explore each individual's behavior and their role within the group as part of a collaborative project. The gratifying result: all the Alphas are pulling together!

The little tower we built from wooden blocks wasn't always stable and didn't stand upright immediately, but we persevered and remained (almost) calm and peaceful, thanks in no small part to the clear and decisive instructions of our "alpha female," Ella! Furthermore, Dr. Nagy provided the group leaders with some essential tools for managing troublemakers and chronic complainers, actively motivating others, and crafting a successful presentation. His insightful observations on the differences between male and female communication styles elicited enthusiastic nods and appreciative laughter from us. Thomas J. Nagy's relaxed and engaging presentation style was once again well-received and provided ample food for thought.

And we've seen firsthand how some speakers become not just friends of the association, but sometimes also members and new Alpha-1 patients, through the example of Isabella Scheiflinger, the advocate for people with disabilities (Office of the Carinthian State Government). She came to the association some time ago for a lecture and noticed that some symptoms of the condition bore a striking resemblance to her own health problems. The subsequent test revealed that she herself has Alpha-1. Since then, she has been a member of the Carinthian Self-Help Group, where she feels very well supported and cared for. And, of course, she continues to be involved in the affairs of people with Alpha-1 in Carinthia. The Carinthian Advocacy Office for People with Disabilities, as an independent and impartial ombudsman's office, addresses the concerns of people who have been dealt a difficult hand in life and who often have to fight against bureaucracy and bureaucratic narrow-mindedness on their own. „Often, people with disabilities and their families are insufficiently informed about their rights and entitlements, or they do not receive adequate support. One reason for this is the fact that they have to navigate a bureaucratic maze when seeking help. The advocacy group for people with disabilities can offer help and support in this regard,„ explained Isabella Scheiflinger in her introduction.

No sooner had Isabella's presentation ended than oriental music filled the air and a sheikh and a wonderful belly dancer burst in. It wasn't immediately obvious that they were Christa and Hansi Rapp, always good for a surprise, who, for the second time, had warmly and personally looked after us even after the event had ended. This time, before our departure back to Munich, we were treated to a view of the magnificent, snow-white peaks of the Karawanks and the Julian Alps.

PS Since the first weekend in March, I have also been a member of „Alpha1 Austria“…

Irina Niepel, SHG Munich, as published in Alpha1 Journal 1-2019.