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Frequently Asked Questions
INDEX:
How do I ...? Where can I find …? What is …? When is/was …?
How do I connect with other polio survivors?
1. You can join a support group (See Post-Polio Directory.)
2. You can peruse and ask a question on Can You Help?
3. You can peruse and offer a suggestion on What Works for Me.
4. You can review a list of the many online groups at Post-Polio Syndrome Email Discussion Lists
How do I donate my body to science for the benefit of other polio survivors?
Many people have asked the same question. Unfortunately, there is no central location/institution that is performing autopsies on polio survivors. Someone locally might be interested, so call the nearest medical school and ask to speak with someone in the Pathology Department or Neuropathology Department.
Where can I find …?
Where can I find a list of the symptoms that polio people are experiencing as they age?
Check out Information about the Late Effects of Polio ...
Where can I find a facility or healthcare professional that has knowledge of the late effects of polio and post-polio syndrome?
PHI maintains a Post-Polio Directory that lists clinics and health professionals from all over the world. If you do not find a contact in your area, connect with the closest support group listed in the Post-Polio Directory and ask if they have any recommendations.
Where can I find local support?
PHI’s Post-Polio Directory lists support group and post-polio organizations from all over the world. Your group is not listed? Notify info@post-polio.org.
Where can I find a list of books written about polio and ones written by polio survivors?
PHI compiles an online list of Books About the Polio Experience.
Where can I find DVDs, Videos and Films about the polio experience?
PHI maintains a list of DVDs, Videos and Films about the Polio Experience.
Where can I find a list of books written by health professionals about post-polio syndrome?
PHI compiles an online list of Medical/Clinical Publications about Post-Polio Syndrome and Other Post-Polio Problems.
Where can I find out if post-polio syndrome is contagious?
Post-polio syndrome is a condition as a result of having had polio earlier in life. There is no indication that post-polio syndrome is contagious. The only time a person is contagious is during acute poliomyelitis. For an authoritative and detailed description of acute poliomyelitis, check out Poliomyelitis at http://www.cdc.gov/vaccines/pubs/pinkbook/downloads/polio.pdf
Where can I find financial assistance for solutions related to the late effects of polio?
PHI has funding available for bracing or special shoes for survivors in need. Email Brian Tiburzi at info@post-polio.org for an application. The maximum amount given per applicant is $500.
Survivors living in the Missouri can apply for funds from the Gilbert Goldenhersh Memorial Tribute Fund for bracing and modified shoes. Email Brian Tiburzi at info@post-polio.org for an application. The maximum amount given per applicant is $500.
And PHI recommends that survivors in the USA contact the closest Independent Living Center.
See listing at ILRU Directory of Centers & SILCs–2008 (Vol. 30)
Or the State Assistive Technology Projects. See National Assistive Technology Technical Assistance Partnership (NATTAP).
Or for those of working age, contact your state’s Vocational Rehabilitation State Offices.
Many states link you to the area offices, too.
Or for the elderly, contact your local Council on Agency. Check for a number in your phone book or search for Council on Aging and your county or city name.
Some larger support groups have established funds to financially assist local polio survivors.
Check Post-Polio Directory for a group near you.
Where can I find the number of polio survivors in the US?
Where can I find the number of polio survivors in other countries?
PHI has received detailed information from the following countries. PHI invites polio-related groups in any country to send their statistics to webmaster@post-polio.org for publication.
England Germany Japan New Zealand
Where can I find the regulations for traveling with a disability post-September 11th?
The following website from the US Transportation Security Administration is for travelers www.tsa.gov/travelers. Click on "Travelers with Disabilities and Medical Conditions" to find specific regulations.
What is …?
What is polio?
Polio is the short name for poliomyelitis, a disease caused by a virus. PHI’s Handbook on the Late Effects of Poliomyelitis for Physicians and Survivors contains an abbreviated description – History of Polio. What is poliomyelitis? is an authoritative and extensive description of acute poliomyelitis prepared by the Centers for Disease Control and Prevention.
For access to an extensive website about polio coordinated by Communication Initiative Network go to http://www.comminit.com/en/polio.html.
What is the status of polio eradication?
For global updates on the global count of cases and the eradication effort, check the Global Polio Eradication Initiative.
What is “post-polio syndrome?”
One can find several variations of a basic definition of “post-polio syndrome.” However, a universal definition is important for research purposes, and the one most commonly used is found in PHI’s Information about the Late Effects of Polio ... For Health Professionals and on the National Institute for Neurological Disorders and Strokes (NINDS) website Post-Polio Syndrome.
PHI’s Executive Director wrote Learn about Post-Polio Syndrome for Polio Survivors and Associates, A Rotary Action Group.
When is/was …?
When was PHI started?
The organization was started as a not-for-profit in 1960, when its Founder Gini Laurie and friends established the International Iron Lung Polio Assistance, Inc. (See History of PHI.) Post-Polio Health International was chosen in 2003 to better reflect the organization’s mission. It replaced Gazette International Networking Institute (GINI), a name that honored the highly-respected founder, who died in 1989.