Gene/Protein Disease Symptom Drug Enzyme Compound
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Query: UMLS:C0002736 (amyotrophic lateral sclerosis)
 19,048 document(s) hit in 31,850,051 MEDLINE articles (0.00 seconds)

Out of 49 former inpatients diagnosed as suffering from myatrophic lateral sclerosis, 21 with a median illness duration of 33 months and severe physical handicaps took part in follow-up examinations as outpatients (n = 8) or have been visited at home (n = 9) or in nursing institutions (n = 4) another 21 patients had already died from the disease). Investigations included medical history (course of illness), neurological and psychiatric examination and interviews with relatives. Measures of daily living handicaps, quality of medical care, density of social network and amount of social support were obtained. In 16 cases, patients and relatives have been able to answer rating scales concerning patient's physical complaints, present mood, depression and anxiety. According to independent, but corresponding judgements of patients (selfrating), relatives and investigators, three out of four patients suffered from moderate or severe reactive depression. The severity of mood disturbance depended on the degree of physical disability in basic daily functions, rated as "loss of autonomy", and on measures of social isolation (number of relatives available). Handicapped and lonely patients seemed unable to cope with their fate, even if regular care was provided. According to former reports, ALS patients have a reputation of heroic stoicism with a low frequency of depression. Our own findings, obtained in patients with advanced disease, do not support these observations. The medical care--e.g. prescription of specific medication, nursing care, physiotherapy, supply of auxiliary devices and aids, nutrition--could often be considerably improved. Special emphasis is given to the indication and appropriate timing for a gastric feeding tube resp. a percutaneous endoscopic gastrostomy (PEG). A second focus of the discussion is the urgent need for communication devices for paralysed speechless patients.
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PMID:[Disability in everyday tasks and subjective status of patients with advanced amyotrophic lateral sclerosis]. 237 92

Amyotrophic lateral sclerosis is a devastating disorder for which the psychological consequences of both the diagnosis announcement and the evolution of paralysis not only concern the patient but also his family. The role of the psychologist is to develop an individualized follow up considering the patient in his globality. The first consultation is, ideally, initiated after a medical consultation explaining the importance of the psychological area in ALS patient care. The psychological follow up will consist in an empathic listening of history and problems. Information will also be given to the patient by the psychologist who's role should not be only passive. When talking about "globality" of the psychological intervention for a given patient, his family takes a determinant place. The psychologist should be able to establish a contact with the family members concerned by the daily support to the patient. The psychological processes through which a patient will evolve should be explained to the family. Depression frequently affects family members, and a specific follow up in those cases has to be undertaken as soon as possible. Such a depressive reaction may also take place after death and a psychological follow up do not end after the death of a patient. The role of a psychologist in ALS care ideally takes places in the context of a multidisciplinary team such as a motoneuron clinic now largely available in our country. The burden of care is frequently heavy both for the family and the team of professional carers into and outside the hospital. The psychologist has a role of mediation between those persons, facilitating verbal exchanges, paying attention to specific difficulties and maintaining a fruitful exchange between the carers, the patient and his family. More prospectively, the psychologist also has a pedagogic role for the carers explaining psychological processes and giving clues for a constructive relationship between the patient and his family and also between this patient and his carers.
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PMID:[Psychological treatment for the patient and caregivers during the course of amyotrophic lateral sclerosis]. 1712 29