Ventilator-Assisted Living©

Spring 2005, Vol. 19, No. 1

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Potpourri

Amyotrophic Lateral Sclerosis (ALS)

Extra Hands for ALS, a program in which high school and college students volunteer to provide non-medical assistance to individuals with ALS, is forming more groups across the USA: the most recent opened in the Dallas-Fort Worth area. Other locations are Saint Louis (home of founder Jack Orchard), Boston, Los Angeles and Orange County, San Francisco Bay area and Boise. (www.extrahands.org)

A Manual for People Living With ALS, Third Edition (2005), from the ALS Society of Canada (www.als.ca) is available online and in print. More than 110 pages cover a range of topics about ALS, including breathing, swallowing, communication, end-of-life issues and advance care planning.

Muscular Dystrophy

Respiratory physicians for people with muscular dystrophy. Physicians with an interest in the respiratory care of people with muscular dystrophy and neuromuscular weakness have agreed to have their contact information made available online for The Parent Project Muscular Dystrophy site. Most of these physicians require a referral from a primary care doctor. The site is maintained by Jonathan D. Finder, MD, Children’s Hospital of Pittsburgh. (www.pitt.edu/~finder/respdocMD.html)

Giving a Face to DMD, a two-disc DVD, “Understanding the disease” and “Guidelines for care and management” is available for $30 from The Parent Project Muscular Dystrophy. Visit www.parentprojectmd.org or call 201-944-9985.

Polio

April 12, 2005 marks the 50th anniversary of the announcement of the success of the Salk vaccine. An exhibit at the Smithsonian’s National Museum of American History, “Whatever Happened to Polio?” opens that day to tell the story of the polio epidemics in the United States, the development of the vaccine, the efforts to end polio transmission worldwide, and the influence of polio survivors on American society (http://americanhistory.si.edu/polio). An iron lung is included in the exhibit. Other commemorations are planned around the USA during April.

Spinal Muscular Atrophy (SMA)

International Alliance for SMA (www.iasma.net) promotes international collaborative research efforts to ensure that there is coordinated research and to exchange information. Representatives will convene for the International SMA Research Group meeting during the FSMA Family and Professional conference in Philadelphia, Pennsylvania, June 23-25, 2005. (www.fsma.org)


An Oral Mask Alternative: The Oracle

Gene Love, polio survivor, Charlotte, North Carolina

After I was hospitalized for a stomach disorder, I was discharged and advised to use the ventilator when I rested in the daytime. I am alone during the day, and my weak arms and shoulders make it difficult to attach the Mirage® nasal mask (ResMed Corp.)

I use at night with the LP6 (Puritan Bennett). I did not want to employ someone to do this for me.

Photo of the Oracle maskMy respiratory therapist remembered seeing information about the Oracle™ (Fisher & Paykel Healthcare) and suggested that it might work for me. It has been a good solution, and I have been using it since then with my BiPAP® Synchrony (Respironics, Inc.) for short rests during the day.

It took a great deal of practice but I am able to put the Oracle on by myself, after placing one side of it into my mouth and then, with one hand, pushing it in the rest of the way with a light bamboo backscratcher. The advantages are that it seals almost perfectly, no headgear is needed, and I can wear my eyeglasses with it. The disadvantages are that it tends to dry the mouth, but it can be used with a humidifier. Of course, I can’t talk with it in my mouth.


IVUN Equipment Exchange: PLV-100s Donated

IVUN received donations of five PLV®-100 volume ventilators that were no longer needed. These ventilators have found homes in Israel, Turkey, Thailand and Mexico. Many thanks to Mrs. Lewis Gumerman and an anonymous donor for their generosity.

Surang Chiemchanya, MD, wrote, “On behalf of the Department of Pediatrics, Ramathibodi Hospital [Bangkok, Thailand], I would like to express my sincere appreciation and gratitude for your kindness in donating a mechanical ventilator … for our underprivileged children. … Your donation will further encourage Dr. Aroonwan Preutthipan and her team to keep on helping the technology-dependent children to go back home efficiently and safely.”

Other ventilatory equipment and aids continue to be successfully “exchanged” through the IVUN Equipment Exchange. If you are trying to locate a specific piece of equipment or have equipment that you no longer need or use and would like to donate it, please contact IVUN, 314-534-0475, info@ventusers.org.

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