Once upon a time, not so very long ago, a patient newly diagnosed with ALS would have been told, “I’m sorry, there is nothing I can do for you. Go home and die.” Today, a patient newly diagnosed with ALS in Eastern Ontario will be told, “I am referring you to The Rehabilitation Centre in Ottawa, to the ALS team, who will help you live with this disease.”
ALS – Amyotrophic Lateral Sclerosis or Lou Gehrig’s disease – is a disease of the motor neurons in the spinal cord and lower brain which control the voluntary muscles of the body. As these motor neurons die, muscle power is progressively lost. The muscles affected and the order in which they are affected varies from one person to another. For some people with ALS, the muscles in the hands, shoulders and feet are the first to show weakness; for others, it is the muscles, which control speech and swallowing. As the disease progresses, leg, arm, trunk and breathing muscles become involved.
ALS affects six to seven people out of every 100,000. It is not a rare disease. The cause is unknown and there is no cure. However, with good management by a knowledgeable health care team, a patient with ALS can be supported to maintain a good quality of life and retain control of decisions affecting his/her care.
A patient referred to the ALS team at The Rehabilitation Centre can expect to receive a total care “package”. The interdisciplinary team works with patient and caregivers to maintain the best possible level of function in all aspects of living.
The team operates in multiple domains. Mobility – including ambulation, transfers, positioning, driving and related issues of environmental accessibility -is one area. Self-care – including personal care and home-making are covered as are psycho-social status – including emotional health and spiritual well-being. Communication, both speaking and writing are addressed, as well as nutrition and pulmonary functions. Advanced directives are discussed and caregiver needs and resources are supported.
Central to care is ongoing monitoring of risk for change. ALS is a progressive, often rapidly progressive disease. It is essential to predict change, rather than monitor or assess change as it happens. Using an interactive risk tool, team members, together with the patient, anticipate change and intervene before a crisis occurs. With timely use of adaptive devices, behavioural strategies, education and environmental modifications, a patient can maintain good quality of life, living with ALS.