Symptoms and Signs of Post-Polio Syndrome
General:
Increased weakness
Increased fatigue
Reduced endurance for routine activities
Lifestyle changes
Increased instability and falling
Need for walking and mobility aids
Weight gain
Dependent edema
Genito-urinary problems
Gastro-intestinal complaints
Sexual problems
Anxiety and depression
Change in tone of voice
Swallowing problems
Choking
Poor memory and concentration
Sensitivity to cold
Neuromuscular:
Increased pain
Muscle atrophy
Muscle pain
Local muscle fatigue
Increased or new muscle weakness
Muscle twitching
Muscle cramps
Anterior nerve root entrapment
Peripheral neuropathy
Muscular-skeletal:
Joint deformity
Spinal deformity
Chronic back pain
Osteoporosis
Degenerative joint disease
Tendonitis
Ligament laxity, especially in the knees
Cardio-respiratory:
Increased shortness of breath
Difficulty in speaking
Snoring
Morning headaches
Peripheral swelling
Increased respiratory infections
Sleep disturbance
Sleep apnea
Daytime somnolence
Weak cough
My thanks to the Westside Post Polio Support Group Newsletter for this information.
POLIO RETURNS TO ATTACK SURVIVORS
LONDON (Reuters) - The campaign to rid the world of polio is marching toward victory but survivors of the virus have found themselves the target of a surprise counteroffensive. Post-polio syndrome hits people around 30 years after they were originally infected with the virus, like the delayed sting in a scorpion's tail. Intense fatigue, respiratory problems, painful joints and declining muscle strength leave people with PPS feeling as if they have aged before their time.
"Over the next several years 100 percent of polio victims will have
some symptom that is attributable to PPS," Dr. Richard Bruno, a
director of the Post-Polio Institute at Englewood hospital and
medical center in New Jersey and chairman of the International
Post-Polio Taskforce said.
He believes there are 15 to 20 million polio survivors worldwide but
that does not include a large number of people who were never
diagnosed with the disease and whose PPS symptoms are often
mistaken for something else. "A study published last year shows that half of
all people with chronic fatigue syndrome have in fact got PPS,"
Bruno, who has been working with post polio patients for 17 years,
told Reuters.
At about the time the World Health Organization began its polio
eradication program in 1989, polio survivor Esther O'Leary began to
notice that a walk that usually took her five minutes was taking 15
minutes and left her exhausted.
Eleven years later, polio has been stamped out in all but 10
countries in Africa and South Asia. But O'Leary, a 53-year-old
mother of four, can no longer sit up straight at the table and lift her food
to her mouth. She has to hunch over her plate, bringing her mouth
down to meet the fork halfway.
For a five-minute walk she uses a wheelchair.
"I used to sip my tea from a cup. Now, because of the weakness, I
have to suck it through a straw. At least I have a good excuse for
avoiding the ironing," she said.
OUTWARDLY FINE
Although polio evokes images of leg braces and coffin-like iron
lungs in which some victims were encased, many survivors including
actress Mia Farrow and renowned British photographer Lord Snowdon
exhibit no trace of the virus.
Most people who were infected with polio contracted only a mild
strain that attacked their brains but did not cause muscular
paralysis. Some experienced only flu-like symptoms and were
never diagnosed with polio.
In the confusion of the sporadic epidemics that broke out during the
1940s and 1950s even people whose muscles were paralyzed
were not always diagnosed correctly.
"If you could breathe you were sent home from the hospital. They
needed the beds," said Bruno, who estimates that 39 percent of
paralytic cases were never diagnosed and the figure for
nonparalytic polio could be even higher.
A major hurdle in the battle against PPS is ignorance of the
condition within the medical profession. Widespread vaccination
means many doctors have no practical experience of the virus and are
skeptical about its late effects.
"Doctors reject anything new that they did not learn in medical
school," Bruno said.
Patients trek from every corner of the globe to his New Jersey
clinic to get treatment they cannot get at home. Although there is no
cure for PPS, physiotherapy helps and patients are advised to rest
frequently.
'THERE IS NOBODY TO HELP'
"There is nobody to help them. Doctors say to them, 'Yes I have
heard about it but I do not believe in PPS,' as if it is some sort of
religion," he said. "People have been told it is all in their head
and they should go and see a psychiatrist."
Dr. Ali Arshad, a rehabilitation specialist based in the northern
English city of Leeds, agreed that doctors are still wary of PPS.
"The medical profession here are still quite skeptical, they still
have not embraced it 100 percent."
This skepticism frustrates people with PPS who have struggled to
establish the source of their fatigue.
"It has been an uphill struggle, like trying to climb Mount Everest,"
said Hilary Hallam, 52. Before PPS stopped her in her tracks the
mother of two had led an energetic life that belied any trace of the
polio that had paralyzed her in childhood.
A former policewoman and swimming teacher with an orange belt
in judo, Hallam now uses both hands to lift a pint glass.
"I could not swim fast anymore, could not pull myself out of the
water anymore, but the doctors told me there was nothing wrong
with me," said Hallam, who founded a support group called the
Lincolnshire Post-Polio network in eastern England at
"I have had to fight every step of the way with the medical
profession and I am still fighting," she said. "Doctors are still not
getting the full picture."
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