Century after 1st major US polio epidemic, eradication eyed

DOYLESTOWN, Pa. (AP) — It rained hard the day before Nick Hovemeyer came down with polio in the summer of 1945. All the kids in his Trenton, New Jersey, neighborhood were out in the street, splashing in the water, just being kids.

The next day, 8-year-old Hovemeyer developed a high fever and couldn't stand or walk. His mother called an ambulance, but the crew was reluctant to take him.

"They walked in and took one look at me and said, 'He's got polio.' And at that time, you were afraid to touch people because it was contagious," recalled Hovemeyer, who is now 79.

Nick and Barb Hovemeyer talk about polio and post-polio syndrome

Fear gripped the country each summer in the early part of the 20th century, when thousands of children caught the poliovirus before two types of vaccines were developed in the 1950s. Many were paralyzed, left with disfigured limbs and experienced other physical and emotional pain. For some, the virus was fatal. No one knew what caused it or how to prevent it, only that it targeted children.

Health and humanitarian organizations hope the debilitating disease -- and the fear it still creates overseas and among survivors -- will be eradicated worldwide this year, the 100th anniversary of the first major polio outbreak in the United States.

But just because we may no longer see new cases of polio, doesn't mean it will no longer affect people. Decades after they had polio, survivors like Hovemeyer have developed post-polio sequelae, or post-polio syndrome, and are experiencing pain and fear once again.

Recalling his own experience, Hovemeyer said the ambulance crew who responded when he became ill took him to Mercer Hospital in Trenton -- thanks to his mother's pleas. From there, he was transferred to Donnelly Memorial Hospital in Hamilton, New Jersey, where he was a patient for three or four months.

Hovemeyer was to be sent home, but because his father was fighting overseas in World War II and his mother was working, he was placed in the Betty Bacharach Home for Afflicted Children. Bacharach was a rehabilitation hospital in Longport, New Jersey, for children with diseases such as polio and tuberculosis.

Hovemeyer's mother was always proud of that, his wife, Barb Hovemeyer, recalled. "His dad was in the war and (she thought) he deserved the best care he could get," Barb Hovemeyer said.

The care at the Bacharach Home included whirlpool treatments, physical and hot packs, which were applied to the affected muscles. Hovemeyer, who was at Bacharach for two years, said the worst part was the no-visitors policy.

"I never saw my mother from the time I went in until the day I left," he said.

That wasn't unusual: Isolation was the first step when people heard the word "polio" in those days.

They knew the virus spread easily, but they didn't know how it spread -- or when and where the next epidemic would occur. That led to summers of fear, said polio survivor Daniel Wilson, a history professor at Muhlenberg College in Pennsylvania who has written several books about the disease and its impacts.

Swimming pools sat empty, the gates to Little League fields were locked, and mothers left their kids at home when they went grocery shopping, said polio survivor John Nanni, a Delaware resident and a district chairman for Rotary International's Polio Plus program.

"People were frightened because . polio was as easy as catching a cold," Nanni explained during a recent presentation to the Doylestown Rotary Club.

Because polio is a virus that spreads from person to person and there is no cure, the Rotary formed Polio Plus in 1985 to eradicate it worldwide through the mass vaccination of children. At that time, there were about 1,000 cases every day outside the USA. As of the end of April, 10 cases had been reported worldwide in 2016 -- two in Afghanistan and eight in Pakistan, Nanni said.

"We are this close to eradication," he said. "But until polio is eradicated, it is a world threat, and because there's no cure for polio, vaccination is the only protection."

Polio lives in the digestive system and those who have it shed the virus in their stool. That's why there was concern, before the vaccines were created, about it getting into the water supply or children spreading it if they didn't wash their hands after they used the bathroom, Wilson said.

The poliovirus can infect the brain and spinal cord, and while most people who get it don't have any symptoms, about one in 200 are paralyzed temporarily or permanently, according to the U.S. Centers for Disease Control and Prevention. The more serious paralytic polio can cause differences in length, size and function of limbs, and even death if the chest and muscles used for breathing are affected.

Many parents felt polio destroyed their children's futures, Wilson explained. There was no Americans with Disabilities Act to protect their rights and most schools and many other public buildings didn't have elevators to accommodate children who needed to use wheelchairs or leg braces and crutches.

"Parents were afraid that their child would never get educated, never get a job or that she wouldn't get married," Wilson said.

The fear also led to people to stigmatize families with a child who had polio. People often stopped visiting affected families. Some communities ordered households quarantined, and even posted warning signs on the front doors of families where someone had polio.

"Even after people returned from the hospital or rehabilitation, and even years later, people were afraid that they could get polio," Wilson said.

During the country's first major polio outbreak in the summer of 1916, local newspapers listed the names of children who had the disease, then known as infantile paralysis, along with their addresses and symptoms, on the front pages.

Hovemeyer, now a Bristol Township resident, regained the use of his legs and was able to walk out of the Bacharach Home on his own. And thankfully, he said, never experienced the stigma associated with polio.

"My mother brought me back home and I was just like any other kid on the block, running and everything," he recalled.

As a child, he played baseball and basketball; as an adult, he was an avid bowler and saltwater fisherman. But he knew there was something wrong about three or four years ago when he was 75 or 76. That's when he began noticing renewed muscle pain and weakness in his legs and trouble with balance, he said.

A fellow polio survivor encouraged Hovemeyer and his wife to attend an area support group and told them about the possibility he could develop post-polio syndrome.

Post-polio syndrome isn't a return of the original disease, but rather some of the original symptoms, including fatigue, muscle weakness, pain, atrophy and the decrease in some physical functions, said Dr. William DeMayo, a specialist in physical medicine and rehabilitation from Johnstown, Pennsylvania. DeMayo used to operate a weekly post-polio clinic and he still treats many survivors in his regular practice.

Survivors also may experience sensitivity to some medications and anesthesia. In fact, several years ago, the New Jersey Department of Health distributed anesthesia warning cards that many survivors across the country now carry.

The diagnosis of post-polio syndrome is one of elimination, meaning doctors have to rule out all other possible causes first, explained Dr. Richard Bruno, a research and clinical psychophysiologist in Hackensack, New Jersey, who has studied and treated polio survivors for decades. His specialty deals with the interactions of the mind and body.

Conditions such as thyroid disease and severe anemia are among those that can cause symptoms similar to post-polio syndrome, so it's important to be sure of the diagnosis, said Bruno, who runs the International Centre for Polio Education, which serves as a resource for survivors and clinicians.

"That's a great danger that polio survivors think, 'I have these symptoms, it must be PPS,' when it may be something else and something else that's readily treatable," Bruno explained.

The theory is that when a polio survivor's nerves were damaged by the initial infection, other nerves took over for them. Post-polio syndrome occurs when the nerves that took over begin to die from age or overuse, DeMayo explained. To put it simply, he said, polio survivors have two nerves doing the same job three nerves used to do.

"As you get old, there is a normal dropout of nerve fibers," DeMayo said. "If you had one of the three nerves drop out before, you still had two. But if you have one of the two drop out, you have one nerve left."

The nerves also are more likely to die because they've been doing so much more work, and when they do die, there's a much bigger impact, DeMayo said.

Bruno said it's important for survivors to "conserve (energy) to preserve (mobility)" and listen to their bodies. That's not always easy for the survivors, he said, because they're generally Type-A personalities.

"When we discover we have this, the problem is not only being diagnosed with it, but having our heads treated to accept the fact that we got sick, we got better, we grew, we changed, we had families, we had fabulous careers . and then suddenly, post-polio syndrome hits," said Carol Ferguson, founder of the Pennsylvania Polio Survivors Network at papolionetwork.org. It provides resources and information to people who had polio and post-polio syndrome and their loved ones in Pennsylvania and other states and countries.

"A lot of polio survivors were encouraged to take President (Franklin D.) Roosevelt as their role model," Wilson said, which is why survivors have higher rates of marriage and employment than the general population. "People would say, 'If President Roosevelt can become president after having polio, you can do anything you want.' "

Hovemeyer and his wife will celebrate 55 years of marriage early next year. They attend a monthly post-polio survivors support group at Abington Hospital-Jefferson Health, but Hovemeyer didn't want to go at first. He also didn't want to begin using a wheelchair or walker or stop going on walks in nearby Falls Community Park. He only recently gave away his bowling balls and said he no longer has any use for his fishing gear.

"They're (polio survivors) Type-A personalities; they are really pushers and think everything's fine," Barb Hovemeyer said.

"It kind of hurts when you can't do nothing anymore," Nick Hovemeyer added. "I just can't do nothing. I can't even cut the grass now."

Being a caregiver has changed his wife's life as well. "You have to take care of each other," she said. "It's not easy, but you do what you have to do."

People with post-polio syndrome should think about what they can do in a day as a line, DeMayo said. The goal is to work up to that line, but not past it, although many end up on one side or the other, he said.

"They end up really getting into a situation where they overdo it and cause increased pain and weakness and then they may have a period where they just can't function and then they have to rest. Then they get frustrated with their level of inactivity (while) resting," he said. "A lot of times it's an issue of just being smart and budgeting how you do things and what you do in order to get the most done during the day."

Nick Hovemeyer still struggles with that from time to time.

"Even the doctor told him, you've got to know your limitations," his wife said.

"The best thing you can do," Nick Hovemeyer added, "is when you feel your legs getting weak, rest. Sit down and rest. Stop what you're doing. And that helps."

Ferguson had to come to that realization as well after doctors told her she needed to wear a leg brace and use a wheelchair. She didn't know she had polio as a child and her parents did not discuss her early illness until she was older.

"That did not work," the Carversville resident said of her initial reaction to doctors' orders about the brace and wheelchair. "That did not work for my head or my family."

She adapted and now uses a power wheelchair.

Carol Ferguson, founder of a polio survivors network, talks about the disease

"This is the reality -- this is what we've experienced -- but we're alive and we're very much alive," she said of the country's more than 1 million survivors.

And although the hope is that there will be no new cases of polio after this year, Ferguson said the epidemic is still felt by those who've had the disease.

"It's not over. The survivors exist," she said, "and we're real."

Sidebar1

Historic polio epidemic hit the northeast 100 years ago this summer

The summer of 1916 marked the first major polio epidemic in the United States.

The outbreak became an epidemic in New York City in June and spread throughout the northeast in the following months, leading to 27,000 cases and some 6,000 deaths, said Daniel Wilson, a professor of history at Muhlenberg College in Allentown. An outbreak occurs when a higher than expected number of cases of disease occur, often suddenly, in a limited geographic area, according to the U.S. Centers for Disease Control and Prevention. An outbreak becomes an epidemic when the disease spreads to a much broader geographic area.

Pennsylvania had about 2,000 cases, Wilson said. There were 717 cases reported in Philadelphia, according to documents from the Historical Medical Library of The College of Physicians of Philadelphia. There was no official breakdown for Bucks or Montgomery counties.

Newark, New Jersey, was hit particularly hard. By the end of September, the city had 1,360 cases and 363 deaths. The mortality rate was as high as 37.5 percent during particularly bad weeks, Newark health officer Dr. Charles Craster wrote in the April 1917 issue of The Journal of the American Medical Association.

Polio was especially deadly in those early years, Wilson explained, because there were no respirators or iron lungs to help children whose breathing muscles were paralyzed. Iron lungs looked like large metal cans and used air pressure to manually inflate and deflate a person's lungs as they laid inside the machine.

Health officials knew little about the "baby plague," as it was called, or how it spread. They studied everything from animals to insects as the potential source.

"Epidemic poliomyelitis appears to be a disease carried directly from place to place by some human carrier not yet possible of identification," Craster wrote in his 1917 JAMA report.

In July 1916, Pennsylvania health officials declared that communities must assume the disease was transmitted from child to child and do their part to keep those under 16 away from groups of children and out of crowds, according to published reports in the Bristol Daily Courier, the predecessor to the Bucks County Courier Times.

"Pennsylvania will have to quarantine children from coming into this state, well or sick, until we discover the cause," the newspaper quoted Pennsylvania Health Commissioner Dr. Samuel Dixon as saying.

By August, the state was ordering communities to ensure human and animal waste and garbage were disposed of properly. The Bristol Daily Courier reported households with polio cases were being closely monitored, with watchmen posted outside families' doors. And the National Guard was enlisted in an effort to stop children from traveling between cities and states affected by the epidemic.

What health officials didn't realize, Wilson said, was that only a fraction of the people who were infected with the poliovirus had symptoms of paralysis. So, in years like 1916, Wilson said, "You've got a helluva' lot of other people who had a mild case of polio and didn't have paralysis, but were shedding the virus (in their stool) and were capable of infecting somebody else."

Sidebar2

Vaccines then and now

As polio epidemics worsened in the 1950s, scientists such as Jonas Salk and Albert Sabin raced to develop a vaccine.

The first one was approved in 1955 and widespread distribution began soon afterward. Since the 1980s, many health organizations and groups, including Rotary International, have pushed for widespread vaccination to eradicate the disease around the world.

Over the years, countries have switched back and forth from a version of Salk's vaccine that used an inactivated or "dead" virus and could be injected to an oral version of Sabin's vaccine that used a live virus. By 1994, polio was eradicated in the Western Hemisphere.

Now, with almost 3 billion children vaccinated, the hope is that the disease will be eradicated worldwide by the end of 2016, said polio survivor John Nanni, a district chairman for Rotary's Polio Plus initiative. Until then, vaccination is still necessary because polio is only "a plane ride away," Nanni said.

In April, countries using the oral polio vaccine began to switch from a trivalent vaccine, which protects against all three types of polio, to a bivalent vaccine, which only protects against types 1 and 3. That's because the only cases of type 2 polio that still occur are those caused by the vaccine; all other cases have been eliminated, Nanni explained.

"Hopefully, by the end of 2016, we've even eliminated (types 1 and 3), and have switched over to the 'injectable' polio vaccine, which has a dead virus and cannot cause polio," Nanni said.

Researchers also are now developing technology to deliver the inactive or dead virus using a patch with tiny microscopic needles so the vaccine is easier and cheaper to administer, Nanni added.

It ain't over til 'it's over, Nanni said, but we are "this close."

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