More than two hundred participants – healthcare professionals, doctors and laypeople – came to Janské Lázně from all corners of the Czech Republic in October for the CEREBROCON conference. Over the course of two days, 24 excellent speakers addressed them on the serious topic of amyotrophic lateral sclerosis and palliative care. "There has never been a professional conference on ALS of this scale in the Czech Republic, and the audience was clearly hungry for information. We managed to put together a quality program, a record number of listeners came, who thanked us at the end, because the knowledge from the conference will help them further in their work and personal lives.", he stated Jan Mertlík, health and social worker spa and event organizer. We asked him:
Why is the topic of ALS attracting so much attention?
ALS is a cruel disease, but it is also still unexplored. Both the professional and lay public devour every new piece of information, knowledge or research. In the Czech Republic, about 800 people live with ALS, but according to forecasts, this number will increase annually. First, because diagnostics are improving, information about the disease is becoming more widely known, and it is expected that neurodegenerative diseases will generally increase. In the lecture program, we were able to combine diverse professional topics that comprehensively portrayed the disease and the listener had information in the palm of his hand so that he could understand all the pitfalls of the disease. At the same time, we contributed to raising awareness about the disease. We invited patient Vladimír Mikuláš, who came to the conference with his family, and was able to show people suffering from ALS a positive path, energy and strength to live.
On the first day, the conference program included information about ALS diagnosis, nutrition options, and speech therapy, but also brought personal experience.
Associate Professor Blanka Adamová from the Department of Neurology at the Brno University Hospital described in detail the diagnostic options for ALS. I think it was an excellent insight into the ant diagnostic work. Associate Professor David Kemlink again, he revealed to the audience what the issue of sleep medicine looks like. Zdeněk Papík, the head of gastroenterology at the Náchod hospital, presented the possibilities of nutrition in a professional, expert and understandable way. He brought expert knowledge in the field of enteral nutrition and presented conventional procedures enriched with modern knowledge. The audience was also won over by the likeable Eva Baborová, a clinical speech therapist. First, she lectured on the possibilities of speech therapy care, but also introduced the ALSA organization, which brings together patients suffering from ALS and actively seeks help for them in all directions. The organization works absolutely excellently and provides patients and families with all possible services.
A powerful and emotional moment occurred when a person diagnosed with ALS, a well-known athlete, came to the podium. Vladimir Mikulas. He spoke about his life and his fight against the disease in a very natural and positive way. His lecture was very powerful and the full hall gave him a minute's standing ovation. It was a very powerful and electrifying experience for everyone.
How did meeting his wife and little twins affect you?
Personally, I was afraid not to show any regret about the fate that awaits them. However, none of the Mikulášs gave even a little space for regret. The extended family accepted the disease, is dealing with it, lives to the fullest extent possible and does not drown in sentiment, everyone supports each other. The Mikulášs impressed me with the energy and strength with which they fight ALS.
The second day belonged to three women who lectured on palliative medicine and managed to present the sad topic in an engaging way...
All three are experts in the right place who are dedicated to their work. Doctor Jana Michlova from Jilemnice Hospital sensitively described the functioning of palliative care in the Czech Republic and presented case studies. Primary teacher Mahulena Mojžíšová from the pediatric department of the Hořovice Hospital, which is a pioneer in pediatric palliative care in the Czech Republic, presented several interesting facts from this area. The lecture of the head of the department was impressive and unforgettable. Irena Závadová, head of the Home Hospice Cesta domu, who spoke about palliative medicine in adult patients. She captivated the audience with a pleasant presentation, and most importantly, she showed doctors how to communicate with a patient and how they should communicate a fatal diagnosis. She discussed the highly topical topic of the patient-doctor relationship and gave many instructions for both parties on how to behave towards each other and get along empathetically. She spoke about sad and complex matters in a clear, believable way and seemed very sympathetic and calm. If I ever had a fatal diagnosis, I would want her to communicate it to me.
Both laypeople and experts came. What did they ask most often?
The attendance was record-breaking. The audience consisted mainly of healthcare professionals – doctors, nurses, but also physiotherapists, social workers and many others. Several family members of patients who came to gather information also participated. The audience mostly asked about practical information. Healthcare professionals wanted to know how the knowledge could be applied in practice, and laypeople were looking into the possibilities of applying the knowledge in their specific case. We received a lot of positive feedback personally on site. And the entire professional content of the conference received a positive response.
How would you like to continue working with the conference topics?
I am very happy that we have been able to establish cooperation with the ALSA organization and Mrs. Eva Baborová. In our spa, we rehabilitate about 10 to 15 patients with ALS every year. This way, we can provide them with not only all medical services, but also information. And this is very important, because many people with ALS do not know how to live with this disease. They often lack basic information, for example, what aids and benefits they are entitled to. So we can help patients with ALS more in Janské Lázně. And last but not least, through the conference and social networks of the ALSA organization, we managed to get more specific and practical information among patients and their families. This way, they have a greater range of options for working with ALS and simplifying some procedures.
Zdenka Hanyšová Whole
The next, 4th annual Cerebrocon Conference will take place on October 16 and 17, 2019. Its theme will be announced in due course.
