Help for polio survivors facing new challenges

Colorado Post-Polio Organization offers services, resources and traveling clinics across the state.

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Polio.

The mere mention of the word can conjure images of stricken children, sometimes with painful metal braces on their limbs. Or perhaps it evokes a terrifying contraption called an iron lung, which allowed people with severe cases of polio to breathe. Maybe it makes you think of President Franklin D. Roosevelt who contracted the disease at the age of 39, but kept it well hidden from the public. Or, if you’re a member of the younger generations, it might not conjure up any image at all, because polio has largely been eradicated in this country, and most of the rest of the world, since the development of the Salk vaccine in 1955, and the Sabin vaccine in 1961.

If you meet a polio survivor today, it’s likely that they had a less severe, more manageable case of the disease and are probably pushing retirement age at a minimum.

By many accounts, polio survivors are a high-achieving group with many of doctors, lawyers and other professionals among their ranks. And they would routinely push through pain or difficulties and literally will themselves to excel at any activity they took part in.

So, that sounds like the end of the story, right?

Not exactly. Because as polio survivors have gotten older, many have discovered that this insidious disease can come back to haunt them in ways they might have never experienced, decades after they first contracted it. Post-Polio Syndrome, which according to Dr. Marny Eulberg, became recognized nationally in the 1980s, is the culprit. It can cause a weakening of the muscles, fatigue, joint pain, paralysis and in more rare cases, trouble with breathing or swallowing.

Eulberg knows first-hand the difficulties in dealing with, treating and even getting a proper diagnosis for PPS. Because beyond the many years of treating patients with the syndrome for free, and working with the Colorado Post-Polio Organization, a subsidiary of Easter Seals, she herself is a polio survivor, having contracted it as a child in rural South Dakota.

“I started having Post-Polio symptoms in the mid-1980s, and was having trouble getting good advice,” Eulberg said. “I decided that if I was having this much difficulty as a doctor, that the layperson would have even more.”

So she got involved in helping other polio survivors who were experiencing PPS symptoms, and has stayed involved to this day. Eulberg looks at dealing with PPS as an intellectual or problem solving exercise, because no two patients are alike and each challenge is unique. She thinks it makes it easier for her patients to hear tough news, like the need for a brace, from her, because they know she understands what they’re going through, as a survivor herself. And she admires their undaunted spirit.

“As a whole, polio survivors are pretty unlikely to be whiners,” she said. “They’ve done amazing things with the limitations their bodies have. One guy I treated, worked 25 years as a roofer with bad legs. Another woman was a semi-truck driver. She held a record for being able to chain-up her tires on Wolf Creek Pass faster than anyone else.”

Mitzi Tolman is the Program Coordinator for Colorado Post-Polio. She knows a thing or two about the disease as well. Her mother is a polio survivor.

She said her mom is a retired school teacher who wears two different sized shoes, but is still very active and isn’t having any PPS symptoms, so far, and for that, Tolman is grateful. Because she knows how devastating those symptoms can be for some of the people who get them.

“A lot of people can go from being fully-functioning adults, to being in a mobility chair all of the time and being unable to do things they did before,” she said. “And it can happen fast.”

Those types of symptoms, and the relatively small amount of resources that have been available to polio survivors over the years are a few of the reasons that the Colorado Post-Polio Organization exists today. The group is sponsored by Easterseals Colorado, headquartered in Lakewood. Sue Brandon is the current Chairperson of the group, and like almost all of the group’s board members, a polio survivor herself, which to her, is only natural.

“I think when you have a personal connection, you want to be able to help people with education, resources and support groups,” Brandon said. “I have an opportunity to help people with things they might need, especially with Post-Polio.”

Brandon said she first got involved by simply offering to help, and before she knew it she was spending several weeks organizing the group’s library. That was 9 years ago, and she’s been helping out ever since. In addition to that library, the group’s offerings are impressive.

According to Tolman, they have seven support groups throughout the state that meet monthly — led by social workers or psychologists, they provide a quarterly newsletter, and they put on traveling clinics where Dr. Eulberg can see patients throughout Colorado. They also have a bi-annual retreat at the Easter Seals camp in Georgetown, featuring presenters that speak about the latest issues affecting PPS patients such as bracing, mobility aids, pain management and working through the Medicare and Medicaid systems.

“The camps also serve as a great way for people to get to know one another and not feel like they’re going through it all alone,” Tolman said.

The youngest polio survivor on the board, Robert Burnett might also be one of the younger polio survivors around. Having contracted the disease as a 2-year-old in Mexico, Burnett moved to the U.S. with his family at the age of 12. He admits to having a competitive streak, especially when it comes to playing soccer, which he’d done for most of his life. That started to change when he began developing symptoms a few years ago.

“I took a heavy fall when I was running,” Burnett said. “I’ve broken my leg three times. In the middle of playing I would just fall down.”

Burnett said a previous doctor had mentioned something about PPS back when he was in his 20s, but when the symptoms started to hit, he still didn’t know exactly what was going on. His search for answers led him to Colorado Post-Polio Organization and Dr. Eulberg. His interactions with her led him to get more involved with the organization, and ultimately to join the board. Burnett said he’s trying to learn as much from his time working with them as he can because he realizes that as a younger polio survivor, the task might fall to him in the future to keep their mission alive.

That realization is important because polio numbers, which have been on the global decline for decades are inching back up. Large increases in reported cases, driven mostly by outbreaks in Afghanistan and Pakistan are making it more likely that Post-Polio services and resources will continue to be in demand in the future.

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