If you thought the Salk vaccine permanently ended the scourge of polio, think again.
By Kelly Rouba
Ms. Wheelchair America 2008 Alana Wallace has found strategies to cope with post-polio related fatigue.
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It’s been about two years since NBC’s show American Dreams had its final run on prime time television after falling victim to low ratings. Today, the show is still missed by viewers who enjoyed being able to journey back in time through the eyes of heroine Meg Pryor as she danced on American Bandstand and worried as her older brother JJ fought in the Vietnam War and her younger brother Will struggled to overcome polio.
One person who was especially sad to see the show come to an end is Dr. Richard Bruno, chairperson of the International Post-Polio Task Force and director of The Post Polio Institute at New Jersey’s Englewood Hospital and Medical Center. Bruno wrote much of the storyline for Will Pryor, which he felt was a unique opportunity to remind the public that polio, although often forgotten about today, lived on past the 1940s and 1950s. In fact, there are about 20 million people worldwide now living with polio.
“Polio is a horrible disease,” Bruno said. “On average, the poliovirus kills off 50 percent of the neurons in the brainstem and, if it goes into the spinal cord, then 50 percent in the spinal cord. You can kill off up to 60 percent of those neurons and have no symptoms at all. A majority of polio survivors had extensive damage to neurons that wasn’t clinically obvious when they had polio (years ago); some of it wasn’t obvious until they went to school or reached midlife.”
Will Pryor, who was in elementary school on American Dreams, often missed school because of the illness and even wore a leg brace to allow him to walk. Towards the end of the show, Bruno wrote a storyline in which Will had corrective surgery to eliminate the need for the brace and he remained in the hospital for weeks until he recovered.
From Disease to Dance
Like the fictional Will, Alana Wallace is no stranger to spending time in the hospital.
“I went through several years of orthopedic surgeries to get me ambulatory,” said Wallace, who contracted polio at the age of 5. “I walked with the use of crutches and braces. I certainly went through a lot of orthopedic surgeries. Boy, do I remember that!”
Wallace is currently one of nearly two million polio survivors living in North America alone, many of whom have similar stories.
Wallace was just 5 years old in 1956 when she was diagnosed with polio. “I remember my dad waking me up, asking me to go to the store, and I said, ‘I can’t move my legs.’” Her parents thought she was joking at first, Wallace says, but, “When they realized I really couldn’t move my legs, they rushed me to the hospital.”
The poliovirus quickly affected Wallace’s lower extremities. “I was hospitalized and I was put in the contagious ward,” she said. “Initially, you were put in an iron lung. I don’t have a lot of memory of that.”
One thing Wallace does remember is when doctors discovered she had developed scoliosis while she was in eighth grade. She recalls being in a lot of pain and having to use a back brace. She later had a spinal fusion and remained in a body cast for one year.
Now 56, Wallace is the founder of Dance>Detour, Chicago’s first professional physically integrated dance company. “That’s how I got into music, I had to sing myself through getting through the day because I was always in casts and missing school,” she said.
When she was in her 40’s, Wallace began using a wheelchair or scooter to help her get around after she was injured from a fall. “The last fall I had scared me because I didn’t regroup from it as quickly as I normally did,” said Wallace, who often fell as a child. “I was losing some of my stamina too. I wasn’t able to walk as far on my crutches as I once could.”
Wallace’s loss of stamina after a fall is common in polio survivors. Many adults who were diagnosed with polio as children have found that its effects never seem to go away. Others, who may have thought they had overcome the illness, have even found that muscle weakness returns.
Post-Polio Syndrome
According to Bruno, “the general name for people who have late, mid-life new or returning problems or muscle weakness after they had polio as a child is post-polio syndrome.” It is caused by the weakening and death of poliovirus- damaged nerves that have been overworking for decades.
Post-polio syndrome also falls under the umbrella term post-polio sequelae. Symptoms of post-polio sequelae include severe fatigue, muscle weakness, joint and muscle pain, sleep disorders, sensitivity to cold and anesthesia, and difficulty swallowing and breathing.
These symptoms occur in about 75% of paralytic and 40% of non-paralytic polio survivors. Bruno, who wrote the book The Polio Paradox: Understanding and Treating ‘Post-Polio Syndrome’ and Chronic Fatigue, noted that although the term post-polio sequelae encompasses each of those symptoms, not all polio survivors will experience all post- polio sequelae symptoms.
Symptoms, which show up about 35 years after the onset of the illness, are most commonly seen in people who were diagnosed with polio after the 1940s. “Physical therapists ‘pumped up’ polio survivors, making their muscles big,” Bruno said, noting, “The more muscle strength they got back, the more they have to lose today. Their central nervous system is being downsized. Their neurons fail, causing muscles to get weaker and their brains ‘brown out’, causing fatigue.”
Fortunately, symptoms of post-polio sequelae can often be avoided or lessened if polio survivors try not to overexert themselves. Instead of adhering to the saying “no pain, no gain” like many were often told to do, Bruno suggests polio survivors follow the ideals of “conserve to preserve.” This means that individuals who had polio should not overexert themselves. Bruno often recommends that his patients take two 15-minute breaks each day and use a wheelchair if needed.
Wallace, who keeps quite busy running her dance company, was recently selected as Ms. Wheelchair America 2008. Although her schedule can be overwhelming at times, she also recognizes the importance of taking a little bit of time to relax everyday.
“It is important for me to rest or relax for a while each day because I try not to overtax myself. Because I have a flexible schedule, it is easy for me to adjust my activity and daily pace. I always listen to the signals my body gives me. When I feel energized, I go with it and when I feel fatigued, I rest. I frequently pull a muscle when dancing, but dance is also a good way for me to stay limber and strong,” Wallace said.
Not Gone, But Forgotten
Wallace and Bruno also try to create awareness of polio whenever possible. “It is not like polio is gone. Polio is forgotten, but it’s not gone,” Bruno said.
In fact, even though it’s been many years since the United States was plagued by an epidemic of polio, the virus recently made its way back into the country. “People think polio was cured when the vaccine was developed in 1955,” Bruno said. “Polio wasn’t cured. There have been six cases of polio in the US in the past two years, the poliovirus having been imported into the country.”
Bruno also said that the number of polio cases has increased significantly in several countries, including India, Pakistan, Afghanistan, and Nigeria, and that the virus could easily be flown into the United States.
Unfortunately, “the number of children vaccinated against polio is falling in the United States,” Bruno said. “There are 20 states and 10 large cities where there have been drops in polio vaccinations from 2005 to 2006. There are one million children under the age of 3 who are not vaccinated against polio.”
For this reason, Bruno and former First Lady Rosalynn Carter created the 2008 “NIPP IT” Campaign to vaccinate infants and toddlers against polio. “The bottom line to the whole thing is that polio is forgotten, but it’s not gone. And if people keep forgetting and don’t vaccinate, it’s going to happen- there’s going to be a polio epidemic right here in America.”
For more information, please visit www.postpolioinfo.com.
Kelly Rouba is a regular contributor to Action.
ALAS!