HEALTH DIFFICULTIES AND SOCIAL ACCEPTANCE OF PATIENTS WITH ALS: research

Amiotrofična lateralna skleroza poznatija kao ALS jedna je od progresivnih neurodegenerativnih bolesti koja je u fatalna za svakog pacijenta. U ranim simptomima moguće je uočiti slabost, a koja se prvenstveno pojavljuje u mišićima šaka, nogu te mišića govora i gutanja. Osnova dijagnoze je kvalitetna anamneza, a zatim se provode neurološki pregledi, slikovne pretrage te biopsija mišića. Liječenju osoba s amiotrofičnom lateralnom sklerozom pristupa se multidisciplinarno, uz simptomatske i suportivne postupke liječenja. Zdravstvena njega bolesnika započinje uspostavom kvalitetne komunikacije s pacijentom ali i njegovom obitelji koje je nužno educirati o samoj bolesti ali i njezinim manifestacija i tijeku. Komunikacija se, s razvojem bolesti otežava, stoga je pacijentima nužno omogućiti alternativne načine komuniciranja, od kojih je najpoznatiji Tobii komunikator, koji omogućuje uporabu suvremenih tehnologija u pretvaranju simbola i teksta u govor. Oboljelima od ALS-a potrebno je osigurati maksimalnu kvalitetu života kroz dostupnu zdravstvenu njegu, posebice kada ista preraste u palijativni način njege. U konačnici, položaj oboljelih u društvu i njihova isključenost uglavnom proizlaze iz razvoja depresije, gubitka posla, osamljivanja te time povezanih gubitaka socijalnih kontakata.Amyotrophic lateral sclerosis, better known as ALS, is one of the progressive neurodegenerative diseases that is fatal for every patient. In the early symptoms, it is possible to observe weakness, which primarily appears in the muscles of the hands, legs, and the muscles of speech and swallowing. The basis of the diagnosis is a good medical history, followed by neurological examinations, imaging tests and a muscle biopsy. The treatment of people with amyotrophic lateral sclerosis is approached multidisciplinary, with symptomatic and supportive treatment procedures. Patient health care begins with the establishment of quality communication with the patient and his family, which must be educated about the disease itself, as well as its manifestations and course. Communication becomes difficult with the development of the disease, therefore it is necessary to provide patients with alternative means of communication, the most famous of which is the Tobii communicator, which enables the use of modern technologies in converting symbols and text into speech. Patients with ALS need to ensure the maximum quality of life through available health care, especially when it turns into palliative care. Ultimately, the position of patients in society and their exclusion mainly result from the development of depression, job loss, isolation and the related loss of social contacts