Rancho Los Amigos
The organization called Rancho Los Amigos has kindly allowed us to reproduce their newsletter which outlines "The Basic Principles of Managing Post-Polio Syndrome," with Susan L. Perlman, M.D.
It's in PDF format and you can download the Newsletter by clicking here ...
What We Know
Polio was first recorded as an epidemic in North America in 1916. Incubation was 1-3 weeks. Paralysis followed within 1-7 days and recovery usually took a minimum of 2 years. The young and the active seemed most vulnerable to polio but it could hit anyone. There was fear among people as to who would be next and how to safeguard oneself against this unknown enemy. Download the 10 commandments of PPS, and a printable flyer here ( Page1, Page2, Page3, Page4, Page5 ); the pages were broken up due to size when combined.
The virus affects the nervous system but the effect depends on where the virus settles. Some symptoms were very mild while others experienced stiffness, pain and severe headaches. Spinal cord involvement led to paralysis while bulbar involvement caused difficulties with breathing and cardiovascular reflexes. This variety of symptoms led to a variety of treatments. Many patients had to be sent far from home to available hospitals. This was especially difficult for youngsters who had so much to contend with already. Some polio patients endured neglect and harsh treatment from a frightened community, including the medical profession.
Polio has no known cure and must run its course within the body. Many died during the epidemic while surgery, iron lungs, bracing and wheel chairs gave hope to those who survived. Some of those survivors would never be well enough to discard their assistive devices but the lucky ones would overcome weakened muscles through extensive and strenuous work. Braces, wheelchairs, crutches and even iron lungs would be left behind while these strong willed personalities with very powerful attitudes got on with life. In a world that was not suitable for the disabled, it was imperative to appear as "normal" as possible and polio survivors learned to ignore pain and fatigue to achieve this goal.
What Happens Now
Polio is the dreadful epidemic that has come and gone in North America. With the advent of the Salk vaccine in 1957, prevention but not cure was possible. Polio seemed to move to the ranks of a bygone disease. However, thirty plus years past the onset of polio, many of the survivors are now experiencing disturbing symptoms. For some: arms and legs have become stiff and sluggish; for others breathing may become difficult; and for others backs will not bend. Swallowing may become impaired and "unaffected" limbs will not respond for some polio survivors. Symptoms vary greatly with one exception, the most commonly described symptom is an overwhelming and disabling fatigue. Doctors have been baffled as to what was happening but are now beginning to understand that this group of polio survivors are facing a new set of problems caused by an old foe. The onset of new physical problems facing polio survivors is called Post Polio Syndrome.