Doctors either don’t know about it, or advise patients to rest and use braces.
Mary ran a marathon while recovering from post-polio syndrome.
“If I have to crawl, I’ll finish,” Mary McManus said.
Lean and tall, the 55-year old mother of two gazes into the distance, her big blue eyes devouring the skyscrapers that line the finishing stretch of the Boston Marathon. Apart from a slight limp in her left leg, Mary’s polio seems a mere memory.
Polio paralyzed Mary’s left side when she was a child in 1958. She gradually recovered through physical therapy and the use of braces. Forty years later, her symptoms came back: she was suffering from post-polio syndrome –a kind of relapse from the disease.
Forgotten but not gone
While the last wave of polio infections in the western world occurred fifty years ago, vaccines have prevented new infections in rich countries. Still, doctors now see people with similar –but milder– symptoms. These are people who already had polio in the past. Yet the connection is not obvious between the two afflictions separated by decades.
“They have not seen active cases of polio since the late fifties,” Dr. Darren Rosenberg of Spaulding Rehabilitation Hospital in Framingham, Massachusetts, says of other doctors. “Because of that, they actually believe polio doesn’t exist. And post-polio syndrome, they aren’t aware of.”
After the initial attack in which the polio virus kills nerve cells, patients grow new ones. After weeks, they usually can walk on their own again, thanks to physical therapy, braces and special shoes. But the recovery is not permanent.
Though some neurons grow back after the initial polio attack, there are usually fewer of them than originally present in the muscle. Performing the same job with fewer neurons places more strain on each of them. After a few decades, the neurons wear out from overuse or aging, says Rosenberg.
This happens in about one polio survivor out of four, which amounts to tens of thousands of potential cases of post-polio in the US. The relapse sometimes even affects muscles that hadn’t suffered from the initial infection. Rosenberg proposes an explanation for this: maybe the virus only remains dormant and gets revived after a few decades, spreading to other nerves.
“I was told it didn’t exist.”
Mary started experiencing symptoms of polio again in the mid-nineties –fatigue, muscular weakness and pain– but nothing as strong as her original attack in 1958: “I was running around my kindergarten gym class, and I just literally dropped,” her left side paralyzed. “They’re not sure if I got it from the vaccine, but it was also one of the last epidemics, so whatever… I got it!”
This time around, Mary’s symptoms were not so clear-cut. She would find it harder and harder to perform basic tasks on her own, and she was planning to move to the first floor of the family house in Brookline, to avoid climbing stairs. But she had retained some control of her muscle.
As a consequence, Mary went undiagnosed for ten years. Mary says: “As a woman, I was told I was neurotic, I was depressed, I was anxious, I had empty-nest syndrome… Of course you get depressed, because you can’t do anything.” By chance, she had heard about post-polio, and asked her doctors about it: “I was told it didn’t exist.”
Google vs. doctors
In late 2006, Mary turned to Google and typed in post-polio syndrome: “I discovered Spaulding’s International Rehab Center for Polio, in Framingham,” where she was diagnosed with post-polio and treated by Rosenberg.
Rosenberg wishes more of his colleagues would know about post-polio syndrome. But he also cautions that the diagnosis is indeed difficult: it requires excluding all other possible causes of fatigue, muscular weakness and pain. The usual treatment involves gentle strengthening exercises of the muscles that were not affected by the disease.
So Mary was told to rest and conserve energy. She quit her job as a social worker, and gradually recovered by going to the physical therapist three times a week. Mary also began writing poetry, a whole book of it, and set up an online business selling customized greeting cards. After six months of treatment, Mary got discharged from outpatient care.
Just don’t do it!
She recalls her last visit with Rosenberg: “I said: ‘You know, I’m not using using the braces anymore,’ and he said: ‘Well, when you’re walking long distances, I want you to use the brace’.”
But instead Mary hired a personal trainer for five months to “get a little stronger.” She recalls a day, about a year ago: “I started crying, I just felt like God called me, and I said: ‘I wanna run the Boston marathon for Spaulding Rehab’.”
“The majority of our patients with polio or post-polio syndrome are of a type A personality,” says Rosenberg. “They do see a decline in their strength from overdoing, and that’s when they’ll finally understand that they need to cut back.” He asks them to walk with braces, so they don’t end up in a wheelchair later.
But Mary doesn’t want to hear that: “I didn’t even go for my annual check-up yet, I’ve scheduled that for after the marathon.”
By blogging and giving interviews, Mary wants to publicize her story so that others who develop post-polio syndrome won’t endure ten years of ordeal. Besides, Team McManus has raised over $10,000 for the Spaulding Rehabilitation Center.
Mary’s marathon is definitely inspiring, but it’s not an example to follow: “Running is not recommended,” says Rosenberg, not to mention doing it for 26 miles.
But on this last left turn after 26 miles and nearly seven hours and a half, Mary’s mouth gapes open at the sight of the spotlights at the finish line 2000 feet away. It becomes clear that Mary’s fight is really about her, her family, and living her life to the fullest. She bursts into tears: “Tom, we’ve made the Boston Marathon!” and stares at infinity, exhausted.
October 28th, 2009 → 12:44 pm @ Johannes Hirn
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