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The view of educationalists and the class collective on the inclusive education of pupils a rare neuromuscular disease
Sajlerová, Lucie ; Mazáčová, Nataša (advisor) ; Vágnerová, Marie (referee)
The diploma thesis deals with the issue of inclusive education of pupils with a rare neuromuscular disease. It focuses primarily on students with spinal muscular atrophy and Duchenne muscular dystrophy. The importance of multi-disciplinary cooperation and communication between school and family is underlined here. The purpose is to map the specifics and the problematic situation in the inclusion of pupils with ND in primary schools and to analyze the conditions of inclusion of pupils with ND in the class group, the limits of this inclusion and above all possible pitfalls. All this from the teachers' point of view. During the research, a questionnaire survey was conducted by teachers and teacher assistants who work directly with students. Specific areas that were commented on in the subsequent discussion. It was primarily about the barrier nature of the school building, classrooms, insufficient communication, working with one's own emotions and difficulties or limitations resulting from other limits of the health status of students with ND
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Quality of life people with muscular dystrophy at different stages of their lives
Krčilová, Radka ; Hájková, Vanda (advisor) ; Zakouřilová, Hana (referee)
Muscular dystrophy is a serious congenital disease that is currently incurable. There are many types of this disease, and one of its forms is Duchenne muscular dystrophy, which mainly affects boys and shortens their lives to a few decades. The absence of dystrophin in the muscles is manifested by the weakening of the muscles and their gradual loss. Boys soon lose the ability to walk and other momentum. At the same time, heart function, breathing, and bone quality are compromised. Such a life is not easy for a boy. Fatigue, lethargy, frustration come along with puberty. They have to get used to frequent medical examinations and checks, stretching exercises, various rehabilitations and stays in the spa. He needs to start asking for help and gradually asking for it more often and in many ways, eventually in almost all of them. Not only he needs psychological support, but also the caring family. The work seeks an answer to the question of what the quality of life with this disease can be, how it is experienced by the young person himself, and how it is seen by someone involved in the care. It describes this quality of life in different time periods gradually. Answers were also sought to the question of whether more could be done for the quality of life of these boys, e.g. through greater awareness of...
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Effect of physiotherapy and AFO extension verticalization in patients with Duchenne muscular dystrophy
Jánská, Anna ; Haberlová, Jana (advisor) ; Zounková, Irena (referee)
Our research is focused on using orthotic devices in patients with Duchenne muscular dystrophy (DMD), particularly in the ambulant phase of the disease. DMD is the most common hereditary muscle disorder in childhood. The typical symptoms are progressive muscle weakness and contractures that lead to loss of ability of independent walking, typically among the age of 9 to 13 years. The theoretical part is focused on pattern of standing and walking in these patients, the posibilities of useing the orthotic devices in various stages of the disease, and on the problems of contractures and deformities. The other teoretical part of the work is devoted to certain physiotherapy interventions and to associated physical activities. The practical part of the research is based on assesment of effect of physiotherapy and use of the nigt orthesis AFO (Ankle- Foot-Orthesis) in group of 10 DMD boys in the average age 9,1 ± 2,7 years. All boys were examined before and after 6 month of therapy. In examinations the following tests were used: NSAA (North Star Ambulatory Assessment), BI (Barthel index) measurements of muscle strength by hand held myometr and measurement of PROM (passive range of motion). The practical part also includes analysis of questionnaire datas from 19 patients with DMD collected in year 3/2013, questions...
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