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Post-Polio Health (ISSN 1066-5331)

Vol. 10, No. 3, Summer 1994
Read selected articles from this issue ...

GINI Conference Postscripts

Status of Polio in the World Today
Robert A. Keegan, Public Health Adviser, Centers for Disease Control and Prevention

Participate in the US Health Care Reform Debate

Interaction with TIME

Case History
Charlotte Gollobin, MS, LN, CNS

Readers Write / Post-Polio Bibliography / Useful Resource Numbers


Sixth International Post-Polio and Independent Living
Conference, Fall 1994

GINI Postscripts

The Sixth International Post-Polio and Independent Living Conference organized by Gazette International Networking Institute (G.I.N.I.) attracted 400 individuals from around the world June 16-19, 1994. Partici­pants, many of whom were attending their sixth G.I.N.I. conference, included polio survivors, ventila­tor users, disability rights leaders, health professionals with disabilities, and health professionals interested in home mechanical ventilation and post-polio issues. Half of the individuals attending were accompanied by a family member, friend, or attendant.

The expertise of the panelists, along with the sophisti­cation and diversity of the attendees, provided excel­lent opportunities for open discussion – a hallmark of G.I.N.I. conferences. The conference welcomed first-time presenters volunteering their time and sharing their professional opinions while "rubbing elbows with their patients."

The issues facing polio survivors are multi-faceted and complex and the program provided something for everyone – the theoretical, philosophical, psychol­ogical, and practical. Individuals were able to choose sessions discussing alternative or complimentary therapies. Many of the presenters in these well-attended sessions were challenged by individuals in the audience – consumers and health professionals alike.

The recurrence of the virus issue was revisited.

The question will continue to be asked until further research is completed. At the moment, researchers appear to favor the theory that polio damaged nerve cells are wearing out as evidenced by new weakness. The issue was discussed in more detail at the New York Academy of Sciences Meeting (April, 1994, see page 10) where studies which imply a reinfection, or a new infection, were questioned.

Users of ventilators and health care professionals discussed issues relating to home mechanical ventilation. Polio survivors, the pioneers of living at home on a ventilator, exchanged their time-tested experiences with other users and health professionals. Additionally personal issues were addressed such as recurring infection, changing equipment, and the search for a better face mask.

Despite the unseaonable heat, many participants took advantage of the central location of the St. Louis Marriott and St. Louis' new accessible light rail system to visit the Arch grounds, view the site of the "500-year flood," dine with old and new-found friends, and watch baseball.

REFLECTIONS

"Thank you for inviting me to speak. Most of all thank you for helping me get back my `voice.' Your gentle questions and taking the time to listen to my feelings gave me the inspiration to start thinking about what I have learned all these years." Joyce Tepley, TX

"The most gratifying thing, however, was the spirit of fellowship and friendliness exhibited by virtually everyone I saw" Douglas M. Smith, MD

"This one was tops in attention to detail, organization, and content." Jean Graber, KS

"It was particularly outstanding in the balance between comprehensiveness in scope and thorough in substance, not to mention the fact that it was a lot of fun." Margaret Campbell, PhD, Downey CA

"... glad to see some of the alternative treatments high­lighted so we can have a chance to be informed and make choices that we feel good about." Jim Powell, IL

"The educational and networking opportunities were just great. I also enjoyed the tourist opportunities in your fair city" Sharon Goodenow, NY

"It was so filled with information, and I loved the socializing. I spent some time with the Remmers and Hanna Laine after the conference and taught them about American things. When we are in Stockholm in July he will make me a new nasal mask." Gail Genereau, WI

"Last week while vacationing in Chicago one of our members who is a crutch user fell and broke her arm. Her husband called and my reputation was instantly embellished because I could send them to Dr. Irwin Siegel, an orthopedic physician who was a panelist during the session I moderated during the conference. Really it was all thanks to you. Nickie Lancaster, RN, TN

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