Post-Polio Syndrome
"Post-polio syndrome (PPS) is a condition that affects polio survivors years after recovery from an initial acute attack of the poliomyelitis virus. Post-polio syndrome is mainly characterized by new weakening in muscles that were previously affected by the polio infection and in muscles that seemingly were unaffected. Symptoms include slowly progressive muscle weakness, unaccustomed fatigue (both generalized and muscular), and, at times, muscle atrophy. Pain from joint degeneration and increasing skeletal deformities such as scoliosis are common. Some patients experience only minor symptoms. While less common, others may develop visible muscle atrophy, or wasting.
Post-polio syndrome is rarely life-threatening. However, untreated respiratory muscle weakness can result in underventilation, and weakness in swallowing muscles can result in aspiration pneumonia. The severity of residual weakness and disability after acute poliomyelitis tends to predict the development of post-polio syndrome. Patients who had minimal symptoms from the original illness will most likely experience only mild post-polio syndrome symptoms. People originally hit hard by the poliovirus and who attained a greater recovery may develop a more severe case of post-polio syndrome with a greater loss of muscle function and more severe fatigue."
More Post-Polio Syndrome Information
National Institute of Neurological Disorders and Stroke (NINDS)
http://www.ninds.nih.gov/health_and_medical/pubs/post-polio.htm#whatis
National Institute of Neurological Disorders and Stroke Post-Polio Syndrome Fact Sheet
http://www.ninds.nih.gov/health_and_medical/pubs/post-polio.htm
Information about the Late Effects of Polio
http://www.post-polio.org/edu/pabout.html
Maine Resources
Post Polio Support Group of Maine (PPSGM): http://www.ppsgm.org/
PPSGM Newsletters: http://www.ppsgm.org/newsletter/index.htm
The Post Polio Support Group of Maine is a private, non-profit 501 [c] (3) organization. We offer the latest information on the late effects of polio to more than nine hundred polio survivors, their families, and health care providers throughout Northern New England and parts of Canada. Support for our work comes from donations from the public and from a grant furnished by the Pine Tree Society.
National Resources
Lincolnshire Polio Network listing of Post Polio Group (UK):
http://www.ott.zynet.co.uk/polio/lincolnshire/
The core of this site is an online library of well over one hundred full text articles on Post-Polio conditions, many from peer reviewed medical journals. The library is catalogued to assist reading order and new articles are added typically every few weeks. A categorized directory of Polio resources is also provided with every entry having a description. The regularly updated NewsBites section includes Polio related news items from around the world and all the bi-monthly LincPIN Post-Polio information newsletters are available in the Networking section.
Post Polio Support Group (Ireland): http://www.ppsg.ie/
The Post Polio Support Group (PPSG) originated from a meeting of three Polio survivors in 1993. The object from the outset was to assist people who were experiencing the Late Effects of Polio including Post Polio Syndrome. As a result of media publicity surrounding the establishment of the group, many polio survivors experiencing problems contacted the organization. A significant problem for these people was the lack of information available to them about their condition. PPSG began to disseminate information and held a one-day national conference in May 1994. The group had input in designating the neuromuscular clinic in Beaumont Hospital, Dublin as the specialist medical location for polio survivors.
Post-Polio Syndrome CentralPost-Polio Syndrome Related Internet Info and Support Resources: http://www.skally.net/ppsc/
Basic facts about PPS for polio survivors' doctors, family & friends.
Gazette International Networking Institute (GINI): http://www.post-polio.org/index.html
Coordinator of International Polio Network (IPN): http://www.post-polio.org/ipn/index.html
International Ventilator Users Network (IVUN): http://www.ventusers.org/index.html
Promoting health and independent living for polio survivors and home mechanical ventilator users.
March of Dimes Birth Defects Foundation: http://www.modimes.org/aboutus/789_821.asp
New Mobility Magazine: http://www.newmobility.com/review_article.cfm?id=177&action=browse
After 15 years of digging, archaeologists from The Post-Polio Institute have unearthed 10 definitive "commandments" for treating post-polio sequelae.
Greater Boston Post-Polio Association: http://gbppa.org/member_arts.htm
"Living With Post-Polio Syndrome": http://healthlink.mcw.edu/article/996372413.htm
International Rehabilitation Center for Polio: http://www.polioclinic.com/
The IRCP, a non-profit center, was started at the beginning of 2001 as an extension of the existing polio clinic directed by Dr. Julie Silver at the Spaulding Rehabilitation Hospital Network in Massachusetts. This original polio clinic drew people from all over the world and Dr. Silver recognized the need for an expanded clinic that would offer both more and better medical services to polio survivors who came to the IRCP seeking care.