The once and future sting

The Asheville Orthopedic Hospital was already nearly 10 years old when Dorothy Holland came to town in 1947. The stone mansion near Biltmore Estate had been converted into a hospital for children with developmental disabilities, and after a short stint in Mission Hospital’s neurology ward, the 26-year-old nurse became one of three RNs at Asheville Orthopedic.

Dorothy Holland is pictured back then (left) and today. She was one of the hospital’s few nurses when polio swept through the region in 1948 and 1952.

The historic facility, which later became Thoms Rehabilitation Hospital, is now home to CarePartners Health Services, a nonprofit health-care provider.

“It just takes me back,” Holland says about the building, now the centerpiece of the CarePartners campus. “There are so many memories.” She and her co-workers lived in a dormitory on the property and became good friends.

But as the 1940s came to a close, the hospital’s mission changed dramatically. Patients with new symptoms—extreme fever and paralysis—began showing up on a steady basis. Polio had arrived in the region.

By the time the epidemic broke out here (in 1948 and again in 1952), the disease had already ravaged the United States for much of the 20th century. There was no predicting when and where a new outbreak would erupt or how much damage it would do. And as the number of cases grew, the Asheville Orthopedic Hospital emerged as the only facility in Western North Carolina that would take patients—mostly children—who were stricken by the illness.

With some 15 polio patients now being admitted every day, Holland and her colleagues struggled to adjust to the demanding treatment regimen. But they were soon overwhelmed, and the hospital called in 100 extra nurses from the Red Cross, and tents and cots from the U.S. Army.

“It was very hard nursing,” Holland recalls. “So much care had to be given to them.”

As the epidemic raged, the hospital added new wings to accommodate the swell of patients. At its peak, Asheville Orthopedic was treating up to 300 polio patients at a time, and community groups and churches made donations to help underwrite the soaring costs. (Nationwide fund-raising efforts led by President Franklin Roosevelt, himself a polio survivor, evolved into what is now the March of Dimes.)

Back to the future: Above, the polio wing of Asheville Orthopedic Hospital, now CarePartners, under construction in 1948. The stone mansion is still the central building on the campus. historic photos courtesy CarePartners Foundation

An earlier outbreak in Hickory, 80 miles away, had demonstrated both the impact of the disease and what a community united against it could accomplish. In what became known as “The Miracle of Hickory,” area residents transformed a summer camp into a polio ward in 55 hours in 1944. The epidemic continued to dominate the local paper’s front page every day until the patients were transferred to Charlotte nine months later, according to historian and novelist Joyce M. Hostetter.

In some ways, polio was a great equalizer. “It had no respect for if you had money or if you didn’t,” notes Holland. Driven by necessity, the polio wards became the first integrated hospital facilities in the South.

A depressing and rewarding time

By the time 4-year-old Sandy Warren was admitted to the Asheville Orthopedic Hospital in 1952, the number of new polio cases nationwide had peaked at an estimated 38,000 a year.

Warren’s memories of the place are few but vivid. “Some of it’s just flashes,” she says: the screen porch she shared with other children; a Cinderella watch she’d been given for her birthday that was taken away with her clothes to be destroyed. “They burned everything I had on, because that’s what they did; this stuff was spreading so fast.”

How life went on: The Hartley family during a visiting session at Asheville Orthopedic Hospital. Families were allowed to visit for two hours each week.

Warren celebrated her fifth birthday at the hospital, learned to walk with braces on her back and legs, and saw her parents for two hours every Sunday. But her stories belie the horror of the disease and its consequences. “They’re not great memories, being in the hospital, but they are not nightmarish,” she says now.

For her part, Holland says treating the children sparked a mix of emotions. An effusively positive person, she found it at once a depressing and rewarding time. And when the dedicated nurse took time off to venture into Asheville, she confronted fears of contagion. Little was known about how the virus spread, and on the bus, people would move away from anyone they knew was coming from the hospital.

“I had so many people ask me, ‘Why did you go up there?’” Holland says now. But even after Jonas Salk’s polio vaccine, introduced in 1955, began to stem the outbreaks, she kept at it until her retirement in 1982.

An unwelcome return

Polio is often perceived as a historical artifact, a once-devastating illness that has long since been vanquished. Increasingly, however, the forgotten disease is muscling its way back into America’s present. As they’ve gotten older, an estimated 40 to 60 percent of polio survivors have seen new symptoms begin to emerge—increased soreness in joints, severe muscle fatigue, and a general tiredness—all signs of a condition called post-polio syndrome. As yet, there is no cure for the disease, which can interfere with breathing in severe cases.

Recognition of the condition has come slowly over the past couple of decades, as more and more polio survivors have sought medical treatment, and their symptoms didn’t match the familiar conditions associated with aging. Diagnosis is still based largely on a process of elimination. In the interim, however, references to post-polio syndrome abound on the Web, serving as a catalyst for increased awareness of both symptoms and therapy.

In a meeting room at CarePartners, Holland and Warren met recently with the Post-Polio Resource Group, a gathering of local polio survivors who’ve been coming together since last October. Besides reuniting with several patients who’d been treated at Asheville Orthopedic, the two also met with other polio survivors, now in their 50s, 60s and 70s. Group members shared indelible memories of how overcoming the crippling effects of the virus had affected their lives.

Fighting back

There are several types of polio virus, but the one that landed so many children in the hospital in the first half of the 20th century attacks the nerve cells that control muscle movement, often resulting in partial or full paralysis. Many patients lost the use of arms and legs, and even the ability to swallow or breathe. Those in the latter category were placed in an iron lung.

Children admitted to the hospital were first quarantined for two weeks until the fever broke and the virus stopped being contagious. Muscle paralysis was treated in several ways, including physical therapy in tubs of warm water. Still, survivors often left the hospital in back and leg braces, and some spent the rest of their lives in iron lungs.

In time, however, most survivors were able to regain some muscle mobility and shed their braces, though many still walk with a limp.

When Warren was 10, her family moved away from Asheville. By age 12, she was out of the back brace, and in the course of several more moves during her teen years, she shed her leg braces too.

Like many polio survivors, Warren grew up not wanting to be coddled or pampered for having had the disease.

“We were so busy trying to be like everybody else, we thought we were like everybody else,” she observes. “There were never special accommodations made for me. I did what everybody else did, and I adapted.”

Throughout her adult life, Warren and her husband, Gerald, moved around the country and traveled frequently. They moved back to Asheville in 1985, and she’s worked at the Department of Motor Vehicles since 1992.

In the last five years, however, Warren has seen her strength decline, and after a fall at work, she says, “Everything fell apart.” Her right leg began getting weaker, and she felt generally fatigued. Seeking to regain her strength, Warren turned to CarePartners for physical therapy, but as with others in the Post-Polio Resource Group, the treatment only left her more fatigued.

Like many polio survivors, says Warren, she had fought hard in her youth to overcome the limitations imposed by the disease—especially in terms of mobility. As a result, however, she felt she’d largely left the disease behind her. Perhaps for that reason, she was reluctant to admit what was happening; the prospect of returning to braces and crutches was not a welcome one.

“It’s a realization, I think, that most of us fought,” she says now.

Recently, however, Warren took a step she’d managed to avoid all these years: The former shrimp-boat pilot had a ramp installed on the front porch of her home in Oteen. She’s also finally started using a motorized scooter when shopping at Wal-Mart. “I fought that one long and hard,” she says with a chuckle.

Sounding the alarm

Touching base: Polio survivors, some of whom were child patients at Asheville Orthopedic Hospital, meet quarterly to discuss post-polio syndrome. photo by Jonathan Welch

Stories like these began to emerge over the past year as local historian Cliff Davids researched an oral-history project commemorating CarePartners’ 70th anniversary. And though his research also covers other milestones in the facility’s past, the saga of the polio nurses and survivors continued to evolve the more he dug.

One of the first people Davids met with was Warren; after years of walking unaided, she now wears a leg brace and uses crutches. That meeting and others like it led to the formation of the Post-Polio Resource Group.

“We need to have a project that gets the word out about us,” Warren told an audience of roughly 40 at a recent meeting. Regulars in the group, whose numbers grow with every meeting, are loath to refer to themselves as victims and see their informal gatherings as less a support group than a coming together of kindred spirits and a catalyst for attracting the attention of the medical community. As Warren points out, most spent their lives trying to overcome, rather than succumb to, polio’s aftermath. The mood of the meetings is light and self-deprecating, with speakers often joking about the effects of age and comparing their symptoms.

Estimates of the number of polio survivors who are still alive vary widely, but they average around 600,000 in the U.S.—and there’s speculation that as many as half of them may be susceptible to Post-Polio Syndrome. They include people whose original cases of polio were so mild that they never knew they had the disease.

Susan Voorhees, an occupational therapist at CarePartners, says that many of the symptoms result from the body’s response to the damage caused by polio. Forced by the motor neurons to overcompensate for the initial paralysis, the muscles have gradually worn down over the decades.

“Over a period of time, [these people] have worn out their muscles,” she explains. Voorhees’ training in physical therapy is only one aspect of her expertise: She was 3 months old when she was stricken with polio in 1949.

Because of the age of most polio survivors, however, post-polio syndrome is often misdiagnosed as fibromyalgia or arthritis. Normal physical therapy, which some seek out when the weakening begins, can actually do more harm than good, wearing out the muscles even faster.

“I did strength training; I thought I could get it back,” reports Dan Moury. Treated at the Hickory polio hospital when he was 9, Moury now belongs to the Greensboro-based Triad Post-Polio Support Group. His story is a common one.

As Warren notes, “I know that there are people out there who don’t have a clue as to what is going on with them.” At one point, she says, she was advised to see a psychologist to treat depression. “I wasn’t depressed—I was pissed!”

At this point, notes Warren, information may be the most critical weapon in the fight against post-polio syndrome. Few doctors even seem to know about the condition, she says. For many health practitioners, polio just isn’t on their radar anymore.

Even Voorhees, a licensed health professional, says she hasn’t found a local doctor who diagnoses and treats post-polio syndrome. “I don’t even know any neurologists who know about it,” she says.

To fill the medical vacuum, groups like this have sprung up around the country (including one in Hendersonville), and the Asheville group is considering organizing a conference to coordinate with their counterparts nationwide and trade information. “If we get to talking about this, we are bound to find a doctor who knows about it,” Warren told the group.

Meanwhile, the Post-Polio Resource Group continues to grow. Veterans of many battles, its members remain in high spirits as they gather in a place that, after 50 years, is once again providing support for polio survivors who refuse to be victims.


Strength in numbers

The next Post-Polio Resource Group meeting is slated for Saturday, Aug. 11, at CarePartners on Sweeten Creek Road in Asheville. For more information, call the CarePartners Foundation at (828) 277-4815. For information on the Post-Polio Support Group at Pardee Health Center in Hendersonville, call (828) 749-1294.

 

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3 thoughts on “The once and future sting

  1. Joseph R. Boyd

    As a polio patient some 69 years, 11 months, and a few more days ago, (I was 12 days old!! Maybe the youngest on record.) I’ve experienced all of the above, particularly the lack of knowledge about polio and PPS from physicians today. Keep me informed of any developments, please.

  2. Estee Lopez

    I have a freind with polio. He is 58 and has not been seen by a doctor for the past 10 years. I think he needs to be checked for his polio. I need a recommendation of a good doctore in the New York Area. Can someone advise me?

    Estrella

  3. Hazel

    I had Polio in 1950 at the age of 7. I was a patient at the Asheville Orthopedic Hospital (my Mom called it the Billmore Orthopedic Hospitl) for 54 days. I was blessed by God that there were no apparent problems when I was released. As I grew, problems developed and I have had 4 surgeries to correct them. I still look as if I don’t have any bad results from Polio. In the past several years I have noticed a lot of muscle weakness and people are always asking me if I have been running because it seems I am out of breath. I would love to find a doctor that believes in PPS and would be able to tell me if I have it. For the last 14 months I have walked about 25 blocks a day, 5 days a week and climed over 200 steps (average) a day. Instead of getting stronger, I seem to be getting weaker. I would like more information on the support group that meets in Asheville. I would also like to know more about the wonderful nurses that took care of me. Thank you, Hazel

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