ALS, sometimes called Lou Gehrig's disease or Motor Neuron Disease (MND), is characterized by degeneration of a select group of nerve cells and pathways in the brain and spinal cord, leading to progressive paralysis of the muscles.
ALS involves the loss of motor nerve cells. The nerves affected are in the spinal cord and those that travel to the voluntary muscles, with weakness and wasting in the arms, legs and mouth, throat and respiratory system. The loss of nerve cells results in atrophy, or wasting of the muscles served by those cells.
Although symptoms of ALS usually present on one side of the body, both sides are involved and the effects usually become more symmetrical as the disorder progresses.
ALS does not discriminate. Anyone can get ALS--male or female of any race. It usually becomes evident as one approaches middle age. There is a very rare form transmitted from generation to generation and a very rare juvenile form.
ALS progresses relentlessly. There is no recovery or reversal and few plateaus; it is merely a rapid decline in motor capacity. For many, there is little impairment of the intellect and the senses remain intact.
Approximately 2000 Canadians live with ALS at any one time. Ninety percent of people with ALS will die within six years and the progression of the disease will remove them from society for much of that time. Two to three Canadians die of ALS every day.
What can be done?
Nation-wide, ALS clinics employ a team approach to the treatment of disease symptoms and assisting the person with ALS to live as fully as possible. Along with neurologists and other physicians, the team may include a physiatrist, respiratory therapist, occupational therapist, physiotherapist, dietitian, speech-language pathologist, social worker and pastoral care provider.
ALS Societies across the country make a valuable contribution, providing information and referral, access to specialized equipment in a timely manner, support groups for all concerned and advocacy for those affected by the disease.
These teams help those affected with ALS to make decisions that will assist in the management of ALS and to improve quality of life at each stage. Care-giving and caregiver support become vital as the person quickly progresses from independence to dependence.
ALS research in Canada is advancing toward treatment and a cure and research funding is increasing. For example, the ALS Society of Canada's participation in the Neuromuscular Research Partnership, working with the Muscular Dystrophy Association of Canada and the Canadian Institutes of Health Research, has funded nearly $6 million of research in the past two years.
Internationally respected, Canadian researchers are focussing on several areas including proteomics (the study of protein chemistry) to determine the cause of cell death and developing trials of potentially useful drug combinations.
These initiatives in stimulating research and provision of care will eventually result in increased longevity for those with ALS, with improved quality of life, and the hope of a cure for this devastating disease.
More information is available from the ALS Society of Canada site--www.als.ca.
