Lou Gehrig’s disease, ALS and MND: Support for Family Caregivers
May 18, 2010
Hosted by Dr. Gordon Atherley
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David Cameron is President & CEO of the ALS Society of Canada. Rodney Harris is the Chief Executive Officer of the Motor Neurone Disease Association of Victoria, Australia. They describe their organizations. They respond to points from Episode 3, Jan 26, 2010, ‘Family Caregiving and Lou Gehrig’s Disease’, raised by Colleen Smailes, whose husband died from Lou Gehrig’s disease in 2009, and Melanie York, who was diagnosed with it in 2008. The points include support for family caregivers in assisting family members with the disease in their shift from independence to dependence, from communication to speechlessness, and from privacy to relentless exposure; training for family caregivers in recognizing, understanding and providing for the needs of the person; support for family caregivers in advocating for the person, and in recognizing and managing their own needs; and ways to improve recognition of the role of caregivers and enhance understanding of challenges of the disease.
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.