Thoughts on the management of patients with amyotrophic lateral sclerosis

Amyotrophic lateral sclerosis, also called Charcot's disease, is a degenerative disease for which there is no known cure. After a long period of explorations, the diagnosis is finally established, plunging the patient and the family into a long complex process of care where each specialist strives to best relieve the patient's suffering. The recent creation of reference centers favors better organization of accompanying practices, but the practitioners in these centers cannot control all situations and overcome all problems encountered by other caregivers. This illustrates the importance of informing the patient about his-her disease as well as the resistance encountered when palliative care becomes part of the therapeutic needs. We discuss here the specific problems, particularly psychological problems, encountered by patients with amyotrophic lateral sclerosis and question the difficulty in managing them within the framework of a coherent and dynamic care plan.