ALS – Amyotrophic lateral sclerosis, also called motor neuron disease 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, a patient with ALS can be supported to maintain a good quality of life and retain control of decisions affecting his/her care.
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 areas of function:
- Mobility including walking, transfers, positioning, driving and related issues of environmental accessibility;
- Self-care including personal care, activities of daily living and home-making;
- Psychosocial status including emotional health and spiritual well-being;
- Communication including both speaking and writing;
- Nutrition including healthy eating and special needs;
- Breathing including assessment and monitoring of lung functions and lung hygiene, as well as respiratory support.
In addition, caregiver needs and resources are supported and options for future care are discussed.
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 assess change as it happens. Using an interactive risk tool, team members, together with each patient, anticipate change and intervene before a crisis occurs. With timely use of adaptive devices, strategies to prevent complications, education and environmental modifications, a patient can maintain good quality of life living with ALS.
Champlain District ALS Integrated Care Pathway (ICP)
An integrated care pathway (ICP) is a multidisciplinary outline of anticipated care. The ALS Integrated Care Pathway for the Champlain District tool presents an overview of the progression of ALS and identifies potential problems that might arise for the client and caregiver as the disease advances. It also offers a list of local resources which can be accessed to support clients with ALS at different stages of the disease. This anticipatory approach to care benefits clients and families by serving as a planning guide for service providers in securing appropriate resources and supports.
Links to ALS Web sites
- ALS Society of Canada www.als.ca
The core interdisciplinary team includes:
- Physical Therapist
- Speech-Language Pathologist
- Clinical Dietitian
- Respiratory Therapist
- Nurse Coordinator
- Occupational Therapist
- Social Worker
The core team works closely with other disciplines and agencies including:
- Medical specialists
- Rehabilitation engineer
- ALS Society
- Community Care Access Centre
- Community palliative care programs
Making an Appointment
- The family physician or neurologist must refer patients who have never been seen at The Rehabilitation Centre, or who have not been seen in the previous twelve months.
- The team’s physiatrist assesses each patient.
- Team assessment then follows, with priority given to the problems that the patient wants to address first.
Mon – Fri 8:00 a.m. – 4:00 p.m.
Rehabilitation Centre, OPD
613-737-7350 x 75421