Post-Polio Health (ISSN 1066-5331)
Vol. 19, No. 2, Spring 2003
From the Editor
Joan L. Headley, Executive Director, PHI
Gabapentin AKA Neurontin
Susan L. Perlman, MD, Associate Clinical Professor of Neurology UCLA Medical Center, Los Angeles, California
Improving Communication with Our Doctors
Henry D. Holland, MD, Richmond, Virginia
Joan L. Headley, Executive Director, Post-Polio Health International
Our inaugural issue of Post-Polio Health includes "A Statement about Exercise for Survivors of Polio." Motivated by messages from people who have developed an exercise program and report that they definitely feel better, I facilitated this process. Typically they add, "but don't tell anyone, because polio survivors shouldn't exercise" or "I don't want to raise other peoples' hope."
While some people have discouraged exercise because they believe "polio survivors will just overdo it," I believe we can be trusted to make intelligent decisions about our health when given good information.
I intend to continue our focus on health – in the broadest sense – to personally empower you. We ask you to encourage others to join Post-Polio Health International to strengthen the power of the group.
Gazette International Networking Institute (GINI) has changed its name to Post-Polio Health International (PHI) to reflect a more focused scope of services and broader constituency, and has developed a new membership structure to strengthen the organization's advocacy role.
The new name, Post-Polio Health International, is meant to project the broadest meaning of "health," encompassing the physical, emotional, social, psychological and spiritual aspects of individuals' lives. The new name also reaffirms an ongoing interest in international issues.
The mission of Post-Polio Health International ...
To enhance the lives and independence of polio survivors and home mechanical ventilator users by promoting education, networking and advocacy among these individuals and healthcare providers.
"We knew that GINI meant only 'post-polio' or 'home ventilator use' to those who knew our past. We decided to focus on the future – knowing that our founder, Gini Laurie, would have agreed," said Frederick M. Maynard, MD, board president. "And in Gini's tradition, board and staff have worked hard to roll out the new plans."
While the majority of the people it serves are polio survivors, Post-Polio Health International will continue to respond to the needs of all ventilator users through its affiliate, International Ventilator Users Network. Historically, the first ventilator users were polio survivors who had used iron lungs. Now, a growing number of people with a variety of conditions use home mechanical ventilation.
Needs Assessment Drives Planning Process, Changes
"Well-managed organizations periodically evaluate themselves to make sure they are fulfilling their mission," Maynard said. "The board undertook the strategic planning process to determine how our organization could more effectively meet the needs of the people we serve." Taken into consideration were independent survey feedback from subscribers and their families, website visitors, sponsors, donors and health professionals.
Respondents overwhelmingly complimented the quality of the newsletters, and they will expand - beginning immediately in the case of the newsletter for ventilator users. The newsletters have been renamed Post-Polio Health (replacing Polio Network News) and Ventilator-Assisted Living (formerly IVUN News). Future issues of both will feature new formats and more news. Rehabilitation Gazette was discontinued, and pertinent cross-disability information will be incorporated into both of the newsletters.
Surveys also revealed that support group leaders and organizations with similar missions value Post-Polio Health International's willingness to provide assistance and depend on our storehouse of knowledge and reserve of interconnected people. Outreach programs under development will identify additional organizations and individuals with compatible goals and philosophies to create influential relationships to further the mission.
The new membership structure is designed to strengthen Post-Polio Health International's ability to advocate for its constituents. Current newsletter subscribers are automatically members of Post-Polio Health International and/or its affiliate International Ventilator Users Network. See Membership Opportunities that describes the membership levels and offers current subscribers an opportunity to expand their support.
"We encourage our members to pass the membership form on to others – polio survivors, family members and friends, and health professionals – and ask them to join us," said Maynard. "By becoming members, they, too, can support our causes and contribute to the legacy of a truly unique organization."
Our Names Through the Years
|1970||International Iron Lung Polio Assistance, Inc.|
|1964||Iron Lung Polios and Multiplegics, Inc.|
|1970||Rehabilitation Gazette, Inc.|
|1983||Gazette International Networking Institute, Inc.|
|1985||Doing business as International Polio Network|
|1987||Doing business as International Ventilator Users Network|
|2003||Post-Polio Health International, Including International Ventilator Users Network|
The Board thanks the Genskow family who honored their husband and father, Jack Genskow,
a former Board member, polio survivor, ventilator user and disability activist. Their donation,
in recognition of his long-standing work with Gini Laurie and the organization, helped fund this process.