Family Caregiving and Lou Gehrig’s Disease

January 26, 2010
Hosted by Dr. Gordon Atherley

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Episode Description

Melanie York, who has Lou Gehrig’s disease, and Colleen Smailes, whose husband Clayton died from it in 2009, share their experience with and insights into family caregiving for this devastating, incurable disease. Also called ALS and motor neurone disease, Lou Gehrig’s disease attacks the brain and nervous system. It affects around 33,000 people in North America. Progressing in phases, it destroys the brain’s ability to start and control movements. It causes loss of strength and the ability to move the arms, legs, and body. It brings failure of the muscles in the diaphragm and chest and therefore loss of the ability to breathe without ventilation support. It commonly results in death from respiratory failure within 3 to 5 years though 10 percent of persons survive for 10 or more years. But it never removes the ability to see, smell, taste, or hear, or to recognize touch. Nor does it usually impair thinking or other mental abilities.

Family Caregivers Unite!

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Family caregivers are the people who provide care to partners, parents, children, brothers, sisters, cousins, friends, neighbors and even co-workers. They are the people who provide care when everyone else has gone home. They are the people who organize the functioning of the home for the person with special needs, and for the family as a whole. They are the coordinators of care, the managers of appointments, the preventers of loneliness, and the makers of decisions even to the point of Power of Attorney. And they are so often people who themselves are burdened with their own health challenges and who may be in only marginally better health than the persons to whom they are providing family caregiving.

Dr. Gordon Atherley

Dr Gordon Atherley holds the British equivalent of the Canadian PhD and MD degrees, and LLD, Honoris Causa, from Canada’s Simon Fraser University. His awards include Fellow of the Royal Society of Arts, UK. His medical specialties are occupational medicine and public health.
As first President and Chief Executive Officer of the Canadian Centre for Occupational Health and Safety, the Canadian equivalent of the US National Institute of Occupational Safety and Health, he led the creation of Canada’s electronic information service in occupational health and safety, now used in more than 40 countries.
In academia, he held senior, tenured, full-time positions, including departmental chair, in university faculties of physics, engineering, and medicine. He is the author of a textbook and numerous articles and publications.

Since retiring from medical practice, he’s built up Greyhead Associates, which critically researches the safety, effectiveness and fairness of health services for persons with special needs.
Through Virtual Care International, a company of which he’s President, he’s involved in providing sensible technology to family caregivers to help them with their responsibilities, workloads, and concerns.
Now an activist, he urges family caregivers to unite because, more and more, it’s not just their families who depend on them, it’s also the healthcare system as a whole, as it struggles to meet more and more needs of more and more people.

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