La Sclérose Latérale Amyotrophique frappe le plus souvent des individus en pleine activité, sportifs, hyperactifs. La maladie vient télescoper une vie, en modifier tous les repères personnels et familiaux. Elle impose une vigilante et constante présence tant l’évolution conduit le malade vers un emmurement total, avec très souvent une lucidité préservée voire exacerbée. Les handicaps s’enchaînent sans répit, les correctifs plus ou moins performants se succèdent : canne, déambulateur, fauteuil, lève-malade, synthèse vocale, gastrostomie, puis fin de vie ou trachéotomie. Les correctifs « mécaniques » ne suffisent pas. Les aides humaines infirmière, kinésithérapeute, orthophoniste, auxiliaire de vie sont indispensables pour la vie quotidienne. Leur recrutement est difficile, la performance pas toujours au rendez-vous. Les aides financières, administratives, pour modifier l’habitat devenu inaccessible, pour aménager le véhicule permettant les déplacements ou pour financer une présence d’accompagnement, imposent des démarches multiples et tenaces. L’engagement de l’aidant confine à l’épuisement en raison d’une vigilance indispensable même la nuit ! Malade et famille sont face à la déchéance de ce patient lucide culpabilisant devant la charge qu’il représente, au désir qu’il a que cela finisse. L’ARS, avec ses bénévoles hospitaliers et de proximité apporte un réel soulagement à ces familles en détresse. LS usually affects highly active, working, sportive individuals. The disease has a devastating impact on the patient's personal life and family ties.Indeed, the disease requires constant attention from the carer for its rapidly progressive nature leads the patient to a complete state of isolation without affecting his/her intellect. For the patient days, are numbered, for the carer, time is limited.The carer must cope with a number of medical, administrative and financial difficulties. These include belated diagnosis with its disastrous consequences on medication, lack of response from the decision-making services, home-improvements or car-fitting. All this requires amazing tenacity from the carer. All the more so as the progress of handicap is relentless and the patient is bound to use different forms of support, walking-stick, zimmer, wheel-chair, hoist, speech synthesis, gastrostomy, tracheotomy or palliative care, which turn out to be more or less effective. But mechanical devices are not enough. Assistance by a nurse, a physiotherapist, a speech therapist and/or a nursing auxiliary is necessary. There are not enough of these assistants and the result cannot be guaranteed, but their role is essential in home care. The carer's investment can be terribly consuming. The burden of 24h care wears out the carer whose days and nights are being regulated by the disease. Not to mention lonely patients with no means of support who find themselves confronted with inevitable daunting problemsInstitutions providing either temporary or permanent care for ALS patients are scarce.As the condition worsens steadily, the patient suffers sheer desperation and guilt feelings and resents being a burden for family yet would rather stay with them. ARS volunteers who collaborate with medical teams can provide much help. The carer's burden should be greatly lightened too by the newly-installed tutorial system : patients’ files will be followed up by one single person after the center's social worker has drawn them up.Medical and home volunteers cooperate to give the patient the feeling that far from being abandoned or ostracized by society, he/she is constantly being given care.
Read full abstract