** RECOMMEND **“Uncovering the hidden history of polio to understand and treat PPS”
Heavy going but thorough and informative
We have ordered the “hard” copy of this which will be easier to read than the Kindle version. I think you need to skim, skip and browse as it becomes brain befuddling to read from cover to cover. It was a little overloaded with anecdotal referencing for me.
Below is some pertinent information copied from the post polio newsletter :
What are Post-Polio Sequelae
“Post-Polio Sequelae (PPS, Post-Polio Syndrome, The Late Effects of Poliomyelitis) are the unexpected and often disabling symptoms -- overwhelming fatigue, muscle weakness, muscle and joint pain, sleep disorders, heightened sensitivity to anesthesia, cold and pain, as well as difficulty swallowing and breathing -- that occur about 35 years after the poliovirus attack”
Is there treatment for PPS
Yes. Polio survivors need to ''conserve to preserve,'' conserve energy and stop overusing and abusing their bodies to preserve their abilities. Polio survivors must walk less, use needed assistive devices -- braces, canes, crutches, wheelchairs -- plan rest periods throughout the day and stop activities before symptoms start. Also, since many polio survivors are hypoglycemic, fatigue and muscle weakness decrease when they eat protein at breakfast and small, more frequent, low-fat / higher-protein meals during the day.
What can family, friends
Polio survivors have spent their lives trying to act and look ''normal.'' Using a brace they discarded in childhood and reducing overly-full daily schedules is frightening and difficult. So, friends and family need to be supportive of life-style changes, accept survivors' physical limitations and any new assistive devices. Most importantly, friends and family need to be willing to take on taxing physical tasks that polio survivors may be able to do but should not do. Doctors, friends and family need to know about the cause and treatment of PPS and listen when polio survivors need to talk about how they feel about PPS and lifestyle changes. But friends and family shouldn't take control of polio survivors' lives. Neither gentle reminders nor well meant nagging will force polio survivors to eat breakfast, use a cane or rest between activities. Polio survivors need to be responsible for caring for their own bodies and ask for help when they need it.
