Ventilator-Assisted Living

Summer 2005, Vol. 19, No. 2

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Ventilator Conference in Lyon

Dominique Sebbane, ventilator user from Lyon, and John R. Bach, MD.More than 1,100 respiratory health professionals and ventilator users from 33 countries attended the Tenth International Conference on Home Mechanical Ventilation, JIVD, in Lyon, France, April 9-10, 2005.

Proceedings of the conference are available on CD-ROM for 99 through One Science, 47, rue Marcel Dassault, 92100 Boulogne Billancourt, France. (Fax: +33 1 69 20 78 93, contact@e-onescience.org).

Dominique Sebbane, ventilator user from Lyon, and John R. Bach, MD.


Potpourri

Paws With a Cause is an assistance dog program in Wayland, Michigan. The program has worked with adult ventilator users who can vocalize commands and can ambulate.

ADVANCE for Respiratory Care Practitioners, a monthly publication, featured two articles about ventilator users in the February 2005 issue. Jake Etchart, 23, and Dan Monk, 34, detail their lives in one article, and Barbara Rogers discusses sex and the ventilator use in another. (Search website by last names of people to find articles.)

Study and Work Abroad for All is a three-year project of the Independent Living Institute (ILI), financed by the Swedish government, to increase participation of people with disabilities in international study, traineeships, and volunteer work opportunities in Europe, North America, and other parts of the world. Organizations, companies, and universities can register their training and volunteer opportunities online.

For NGOs, corporations, and governmental agencies with trainee-ship programs, ILI provides a resource kit for assessing accessibility of premises and operations for employees and clients with disabilities, and guidelines for formulating and displaying a corporate disability policy.

Eric Obermann, whose article “The Ventilator Boat: Will It Float?” was featured on the cover of Ventilator-Assisted Living (Vol. 18. No. 4, Winter 2004), testified before a US Senate subcommittee overseeing the budget of the National Institutes of Health. Obermann, 23, was the youngest of seven people who pleaded for more money for ALS research.


Everyday Life With ALS: A Practical Guide is a revision of the out-of-print ALS: Maintaining Mobility from The Muscular Dystrophy Association (MDA).

Copious photos of real people with ALS (amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease) and helpful graphics on glossy paper illustrate the wide variety of equipment and aids that are available to help people with ALS maintain a good quality of life. Chapters include assistive equipment, home modification, mobility, exercise and energy conservation, speech and communication, respiratory problems and resources.

The respiratory section could have benefited from a more helpful and better organized explanation of noninvasive and invasive ventilation and the decision-making process. Fortunately, the importance of coughing and secretion removal was emphasized.

The 144-page spiral-bound book is free to people with ALS who are registered with MDA; $15 to others; CD-ROM for $10. Order from MDA’s Publications Department: 520-529-2000, ext. 6299, or publications@mdausa.org, www.mdausa.org.

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