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Videos from the conference What is not talked about...

On Thursday, October 19, we organized the fifth conference for patients with multiple sclerosis at St. Joseph's Home. This time with an international flavor, with colleagues from Slovakia and Poland participating and supported by the Visegrad Fund. Do you want to revisit the outcomes of the conference, or were you unable to attend? We are bringing you the individual lectures from the conference in the form of videos.

Publikováno: 29. 11. 2023


Opening of the conference and introductory speech

Speaker: Mgr. Dominik Melichar, Head of St. Joseph's Home

Symptomatic treatment of multiple sclerosis

Speaker: MUDr. Radomír Taláb, CSc.

Radomír Taláb, an associate professor of neurology, works at the University Hospital in Pilsen and in a private practice in Hradec Králové. He is one of the leading experts on multiple sclerosis. He specializes in the treatment options for MS and the specifics of this disease in children and adolescents. In his lecture, he focused on the possibilities of symptomatic treatment of MS, with an emphasis on the progressive stages of the disease.

Accompanying words

Speaker: MVDr. Pavel Bělobrádek, Ph.D., MPA, Member of the Parliament of the Czech Republic

„How do I live with MS? Better and better!“

Speaker: Mgr. Juliána Ilenčíková

Juliana Ilenčíková worked as a teacher of Russian, English, civics, and special education/logopedics. At the age of 40, she was diagnosed with multiple sclerosis (MS). As the manager of international cooperation for the Slovak MS Association, she arranged its membership in the European MS Platform and the International MS Federation. She has attended more than 50 international conferences. She is a co-founder and chairwoman of the MS Club in Prešov, the founder of the National MS Center, and a sheltered workshop, where she works as a social counselor. She promotes rehabilitation and a healthy lifestyle.

The importance of comprehensive rehabilitation in the treatment of MS patients

Speaker: Jacek Olszewski

Jacek Olszewski is the coordinator of the rehabilitation department at the National Residential and Rehabilitation Center for People with MS in Dąbek. He has been working with MS patients for 24 years. In his lecture, he focused on the importance of comprehensive rehabilitation in the treatment of MS patients.

Prevention of aspiration pneumonia panel discussion

Mgr. Markéta Kleinerová is a clinical speech therapist at the Clinic of Otorhinolaryngology and Head and Neck Surgery at the University Hospital in Hradec Králové. She is a member of the Association of Clinical Speech Therapists and the American Speech-Language-Hearing Association. Among other publications, she has contributed to the „Listy klinické logopedie“ (2021) with the article „Speech Therapy Diagnosis of Swallowing Disorders and Feeding Difficulties in Childhood – Foreign Approaches Available in the Czech Republic.“ She also presented in a webinar for ORLtube (2023) by the Czech Society of Otorhinolaryngology and Head and Neck Surgery: „Thickening Liquids in Dysphagia Therapy – Benefits and Risks.“

Mgr. Lucie Lubinová is a clinical speech therapist, a member of the Association of Clinical Speech Therapists, and has been working at St. Joseph's Home for four years. She perceives her profession more as a vocation and prefers a humane approach that respects the uniqueness of each patient/client. She considers swallowing disorders to be the priority area of speech therapy intervention within the framework of interdisciplinary cooperation.

Mgr. Kamila Voňková is the head of physiotherapy in the health stay department at St. Joseph's Home in Dvůr Králové, with 10 years of experience. She has long been dedicated to respiratory physiotherapy. She enjoys helping patients with multiple sclerosis by setting up proper seating and selecting suitable assistive devices.

Intimacy panel discussion

Bc. Tereza Krejsková is an occupational therapist at St. Joseph's Home. With over 10 years of experience, she recognizes that each client requires an individual approach. For some, the topic of intimacy is common, while for others, it is not. She always asks her clients the question: „What is currently your biggest problem and what do you want to improve in your life?“ For clients, improving the quality of life, particularly in the basic part of Maslow's pyramid—satisfying biological and physiological needs—is often key. This includes intimacy and sex. This topic also deserves awareness so that clients have the opportunity to fulfill this need without embarrassment.

Helena Lešková represents the head nurse in the health department at St. Joseph's Home. Before her maternity leave, she worked in the ICU surgery department at the University Hospital in Hradec Králové, where there was never much time to consider all the needs and wishes of the patients. At St. Joseph's Home, she feels that her work is a vocation, allowing her to fully dedicate herself to each patient and client with individual care. She also organizes internships for students and enjoys providing advice on the selection of assistive devices.

Mgr. Hanka Šimáčková, a graduate in Special Education – Teacher Training, finally chose to work in social services. From 2008 to 2022 she worked in the organization SKOK to Life. She focused on the area of sexuality and relationships of people with disabilities and its systemic introduction into individual services. She became a full-time sexuality confidant for clients throughout the organisation. Her support was also directed to the families, guardians, close people of the clients, as well as to the workers from the individual social services. In 2019, together with Petr Eisner and Věra Srdečná, she founded the association NEBUĎ NA NULE, z.s. – Union of Sexual Confidants of the Czech Republic, of which she is now the chairperson. In 2022, she became one of the first graduates of the Self-Experience Training: Sexual Counsellor for Specific Target Groups of People with Disabilities (Don't Be at Zero, z.s.) and now participates in its management. Since July 2022 she has been working as a sexuality counsellor at the Counselling Centre for Sexuality and Relationships of People with Disabilities in Hradec Králové.

Progressive multiple sclerosis

Speaker: Prof. MUDr. Eva Kubala Havrdová, CSc.

Eva Havrdová is a professor of neurology and works at the Department of Neurology, 1st Faculty of Medicine, Charles University in Prague. She is one of the leading European experts in diseases such as multiple sclerosis and other demyelinating and autoimmune diseases of the nervous system. In her lecture, she presented the current knowledge on MS with an emphasis on the progressive stages of the disease.

There is no sclerosis like sclerosis: ALS vs SM

Speaker: Mgr. Eva Bezuchová
Eva Bezuchová is a clinical speech therapist working at the Department of Neurology, 1st Faculty of Medicine, Charles University in Prague. She works mainly with adult patients with neurodegenerative diseases. She is the founder and director of ALSA z. s., an organization that supports patients with ALS (amyotrophic lateral sclerosis). This organization offers patients therapies, counselling and also provides rental of necessary equipment. (www.zsalsa.cz). In her presentation she introduced the disease ALS, which has a similar name but is very different from MS. She also briefly introduced the functioning of the ALSA z. s. organization.

CITaK, news and proven options for alternative communication

Speaker: Mgr. Kristýna Kolmanová, Josef Tintěra
The CITAK team is made up of several members, and Josef Tintěra, who was at its birth seven years ago, spoke at the conference. During that time he had the opportunity to try several alternative tools. His life and work tool is the Mouth Mouse. By making it a daily part of his life, he is able to explain its use to others and answer questions from his own experience. Kristýna Kolmanová came to the issue of alternative communication „like a blind woman to a violin“. She loves technology and wanted to help those in need. She found this combination at St. Joseph's Home with the CITAK team.

ChytrePomucky.cz, modern technologies in practice

Speaker: Ing. Mgr. Petr Uličný, Jiří Jambor

Petr Uličný and Jiří Jambor from Benetronic.cz presented the web platform ChytrePomucky.cz during the CITAK (Centre for Information Technology and Alternative Communication) NoCode. Everything you need to know about artificial intelligence, the Internet of Things, technical support and training for people with significant mobility limitations, their families and staff.

Options of therapy in facilities specialized in the treatment of neurological diseases on the example of Health Resort Lądek – Długopole PLC

Speaker: Aleksandra Sędziak, MD

Aleksandra Sędziak, is a specialist in balneology, physical medicine and medical rehabilitation. She is an internist, a graduate of the Medical Faculty of the Medical Academy in Wroclaw and a postgraduate in SPA & Wellness. For more than 27 years she has been professionally associated with the Lądek – Długopole Spa a.s., since 2010 as the Director of Treatment. Since 2022 she has been a national consultant in the field of balneology and physical medicine. On a daily basis, she manages the work of the medical team in the care of the clients of the oldest and most beautiful spa – Lądek-Zdrój.

Trends in the system of care for MS patients

Speaker: Ing. Jan Staněk

Jan Staněk is the Head of Fundraising and Communications at St. Joseph's Home. What he enjoys most about being a fundraiser is the opportunity to develop relationships with donors and connect them with those in need. At the Home, his work ranges from project management, to major donor stewardship, to digital fundraising development (Donate a Window, Domovenka, For a Stupid Disease campaigns). What she appreciates most is that she has been able to build a fundraising team on the periphery and set up processes so that fundraising proceeds have tripled. More recently, he has also been consulting on fundraising and Salesforce CRM, and enjoys talking about how to turn the imaginary rudder of business as usual and set a course towards fundraising development.

The project is co-financed by the Governments of Czechia, Hungary, Poland, and Slovakia through Visegrad Grants from International Visegrad Fund. The mission of the fund is to advance ideas for sustainable regional cooperation in Central Europe. 


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