It's about time to put something about Polio and Post Polio Sequelae on my site. I had polio at 29 months old in Arkansas, in 1948, a year there were over 900 cases in the state. So I now have over 70 years experience with polio and its "sequelae." I've said it isn't my top priority for activism, but it has become a top priority for me to be able to continue to be an activist for sexuality-related issues! Here are some links for reference, learning, and reflection.
International Centre for Polio Education
Post Polio Library - Lots of articles
Polio Survivor's Handbook - Downloadable eBook - Recommended!
THE POLIO SURVIVORS HANDBOOK, given to all Post-Polio Institute patients, contains the research-based and time-tested protocol that has been found to successfully treat Post-Polio Sequelae. But this "home version" of the HANDBOOK has been rewritten to educate you, your local doctor and therapists so that you can receive the same customized treatment for PPS close to your home that you would receive at The Post-Polio Institute.
The HANDBOOK explains the causes of PPS symptoms: fatigue, muscle weakness, pain, sleep disorders, cold intolerance and heightened sensitivity to pain and anesthesia. Then, the HANDBOOK helps you to identify and avoid PPS symptom "triggers" and describes a combination of energy conservation, diet, assistive devices, stress and pain management -- BUT NOT EXERCISE -- that addresses both the physical and psychological aspects of PPS, helping you to substitute the old “Use it or Lose it” philosophy for a new “Conserve to Preserve” lifestyle that reduces fatigue, muscle weakness, pain and stress.
The Polio Paradox - Richard Bruno - Recommended!
Amazon.com Review
Outlining a program equally useful for those suffering from CFS, fibromyalgia ME, or post-polio sequelae, The Polio Paradox enables patients to overcome the emotional issues surrounding the disease and begin a helpful regimen of long-term self-care. Using simple diagrams and illustrations, along with plenty of references to medical studies the world over, Dr. Richard Bruno has written a straightforward guide that deals with both the physical and social concerns these illnesses raise.
The first section of the book outlines the recent history of the poliovirus, and how it affected, and continues to affect, several generations. From childhood agonies to adult experiences of extreme fatigue that worsen when patients attempt to stay active, every stage is examined, with a special focus on both how the virus works and how surviving the disease often resulted in a host of social stigmas. In blunt, often humorous prose, Bruno outlines recommendations to aid in dealing with recurring symptoms.
Admonishments like "walls, furniture, and spouses are not assistive devices" and "brake before you break" are aimed at helping patients develop a reasonable exercise program in combination with curtailing exhausting activities and gaining an understanding of how to live with a chronic, potentially debilitating illness. Supplying both a historical perspective and a healthy dose of practical support, Bruno offers an excellent and thorough introduction to the world of post-polio management. --Jill Lightner
Post-Polio Health International - "Post-Polio Health International's mission is to enhance the lives and independence of polio survivors and home ventilator users through Education, Advocacy, Research and Networking."
Intro to PPS - by Joan L. Headley, MS, Executive Director, Post-Polio Health International, Saint Louis, Missouri
Managing Post-Polio, A Guide to Living and Aging Well With Post-Polio Syndrome, by Lauro Halstead
My autobiography has a lot about my experience with polio.
A personal reflection which I wrote as an "experimental" lament for a Bible study