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Castellano G
Alessio, 33 years old. Autonomy in daily life for a person with spastic quadriplegia.
Editorial data: Portale SIVA Fondazione Don Carlo Gnocchi Onlus
Abstract: Alessio is a young man aged 33 with severe spastic quadriplegia, expressive aphasia, nystagmus, as results of a perinatal damage. This study aims to document the path of Alessio and of team of professionals who followed him: this experience involved Alessio’s parents, his caregiver and the whole team of the Centre. Considering the severity of the clinical situation, a multiprofessional approach was needed, in order to improve Alessio situation and to make him more independent, in particular as far as communication was concerned. Alessio has maintained a good level of symbolic cognitive ability, slightly below the norm: although he can’t use verbal language, he has a high understanding and an overall good cognitive functioning. Thanks to his character, his availability and his will, he was able to self determine not only the choice of technological solutions, but his future in general.
Year of publication: 2006
Type of document: Case studies/experiences
Last update: July 2011
Festi C
Roberta, 43 years old. Autonomy in daily life for a person with Multiple Sclerosis
Editorial data: Portale SIVA Fondazione Don Carlo Gnocchi
Abstract: Roberta is a young woman suffering from multiple sclerosis, characterized by hypertension, with tetraparesis, dysarthria and dysphagia. Roberta can’t express herself well and family members considered the proposal for a possible program aimed at improving communication: we have thus undertaken in collaboration with the Regional Centre for Assistive for AT a project aimed at evaluating a system of alternative communication. In parallel, the area of intervention has gradually expanded to include mobility and posture, in order to find solutions designed to lighten the load of assistive care and to improve comfort. Roberta is currently dependent in all activities of daily life and is no longer able to cooperate during transfers, thus totally charging her husband and the personal assistant. The seating system is no longer appropriate and Roberta prefers to remain lying on the sofa for most of the day: in this regard we have proposed a wheelchair with postural system in order to allow her to stay seated for several hours. The aim of this paper is to illustrate the path taken with Roberta to enhance her social participation and, if possible, prevent the risk of isolation. Through the integration of different skills and the service network, we would like to propose a global approach, not only oriented to the provision of services, but to the maximum autonomy as possible.
Year of publication: 2008
Type of document: Case studies/experiences
Last update: May 2013
Lazzarich C
Emanuele, 10 years old. Autonomy in daily life for a person with Duchenne Muscular Dystrophy
Editorial data: Portale SIVA Fondazione Don Carlo Gnocchi Onlus
Abstract: Emanuele is a child, aged 10, suffering from progressive muscular dystrophy type Duchenne. He lives with his mother, a physiotherapist, that until now has coordinated on her own all professional interventions (physicians, pediatric neurology, pulmonologist, cardiologist, orthopedic technicians, etc..), as a response to the needs of her son. Now Emanuele’s mother is no more able to manage the situation by herself, as it has turned more difficult. We intervened in order to try to support her, focusing on five major issues concerning the autonomy of her son: the power wheelchair, the renovation of the bathroom, the accessibility of the home garden, the environment control and accessibility to personal computer. For each topic a specific project was formulated, each identifying needs, objectives and expected results.
Year of publication: 2006
Type of document: Case studies/experiences
Last update: May 2016
Castellano G
Dal silenzio alla parola. Il caso di Alessio
Editorial data: Tesi Corso di Perfezionamento "Tecnologie per l'Autonomia". Università Cattolica Milano e Fondazione Don Gnocchi, a.a. 2005-2006
Abstract: (text automatically translated from Italian) ***Alessio is a young person 33 years old with serious spastic tetraparesis, expressive aphasia, nystagmus, which outcomes of damage ***perinata them. This study means to document to the completed path ***dal the young person and ***dagli the operating ones that has followed it; the experience lived with ***Alessio has been involved the team of the Center, the parents and the assistant to domicile that it follows the young person from six years. A ***multiprofessional engagement was necessary in order to face with of problematic of life of ***Alessio, constructing a solid network and a therapeutic alliance first of all with the relatives, such who allowed to those actions times to make ***to evolvere the situation of the young person, in spite of the ***severità of the stabilized clinical panel, from one dependancy situation also on the plan of the communication to its active participation one. ***Alessio has conserved a good cognitive level with symbolic abilities light to the ***disotto to the norm: also not being able to use the oral language it altogether has one elevated understanding and a good cognitive operation. Its character, its availability and its will have rendered it protagonist in the choice not only of technological solutions. We have with to characterized ***Alessio initially more easily reachable objectives and this has produced in he and its parents the opening of one perspective not only of technological participation tu above all one possibility for ***Alessio of living in way qualitatively more ***autodeterminato its future. They have been therefore experienced alternative modalities of communication that, facilitating the ***comunicativo exchange, have given the opportunity to the young person to ask also technical and technological solutions in order to extend the own ability to control on the environment of daily life and the preferred objects like ***tv, video recorder, stereo.
Year of publication: 2006
Type of document: Thesis
Last update: December 2006
Lazzarich C
“Sapere” aiuta, ma anche “chi sa” ha bisogno di aiuto. Il caso di Emanuele
Editorial data: Tesi Corso di Perfezionamento "Tecnologie per l'Autonomia". Università Cattolica Milano e Fondazione Don Gnocchi, a.a. 2005-2006
Abstract: (text automatically translated from Italian) Emanuele is a child 10 years old, that suffers from Muscular Dystrophy progressive ***Duchenne type; he lives with the mother, ***fisioterapista, than till now physiatrists have coordinated all the participations specialistics (, infantile, ***pneumologo ***neuropsichiatria, orthopedic cardiologist, technicians, etc) alone, estimating she of time in time the needs of its child and proposing she, to every control, the issues to face; hour the problematic ones have become greater, are for number that for importance, and the mother more does not succeed to manage them all alone (neither is right that the face) for which has been attempted to place side by side it and to support it in focusing and to face five great topics relatives to the independence of its child: the electronic wheelchair, the restructure of the house bath, accessibility of the house garden, the control environment and the access to the personal computer. For every topic it has been formulated a project articulated in four is made, ***dall' the identification of the need, to the formulation of an objective, the definition of a project until the realization of the project. The technical assessment has been precious for this mother how much accompanied having it to take action is of the emergent problems that of the urgency to face them, suggesting to solutions tu in the meanwhile understanding and respecting theirs “***modus vivendi”, theirs to feel emotional and the sense of loss that ***is subentrato with progressing of the disease.
Year of publication: 2006
Type of document: Thesis
Last update: December 2006
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