Most people have never heard about post-polio syndrome (PPS). In fact, many people born after the polio vaccine was introduced in 1955 might not have heard about polio—except that they needed the polio vaccine to attend school. Or maybe they heard about it from a relative who had the disease, or who had a disability because of it.

In 1954, because of the polio epidemic in the U.S., almost 50,000 people (adults and children) had different degrees of paralysis, and about 2,500 died because of respiratory failure.

Today about 750,000 polio survivors are living in the U.S. Most have PPS. 

Polio survivors just assumed that their level of disability would remain the same throughout their lives. What we learned later was that there were two stages of the disease. The first was the initial polio attack, which may have resulted in disability. The second stage was reported somewhere around the year 2000, when many survivors developed a greater degree of disability. 

Even survivors who never had a disability were now experiencing various degrees of it.

Research has provided answers.

Polio is the only neurological condition where healthy nerves sprout like extension cords into adjacent muscles that have been paralyzed.

Not all survivors were able to get any use of their affected limbs back. Some were able to get partial, or even all, the use of the affected limbs back. 

Survivors unknowingly had more damage than they were experiencing. That became apparent typically 30 to 50 years later, when many began to experience new weakness, loss of function, intense fatigue, pain in the muscles and joints, muscle atrophy (shrinking of muscles), sleep apnea, cold intolerance and for some, increasing skeletal deformation (scoliosis). 

Those who initially had respiratory problems and those who were in iron lungs began to experience breathing and swallowing problems. This is why it’s called a syndrome. By definition, a syndrome is a group of symptoms that consistently occur together, or a condition characterized by a set of associated symptoms.

Why was this happening? After the initial polio attack, when survivors regained any use of their limbs, they were told to “use it or lose it.” Had they known about a second stage of polio, the doctors would have said, “Conserve to preserve.” 

We attribute PPS to aging, overuse and an immune response that can no longer recognize the sprouts as “us” and destroys them. When this happens—and it can happen over time, or in a very short time—the survivor now has more extensive disability than they had initially.

It’s difficult to explain to a survivor who had little, moderate or no disability, that now they must use leg braces, or return to bracing (after discarding them years ago). They might have to use crutches, perhaps a mobility scooter or an electric wheelchair. Survivors should not use manual wheelchairs, because the use of their arms to turn the wheels might become affected. 

Think of the psychological impact after being told that “you can’t do this anymore.” It’s also very difficult for a spouse and family members to see and deal with the effect it has on a loved one.

It can be expensive to have PPS. If you had little to no disability, and now find yourself disabled, is your home handicapped accessible? Are your bathroom, shower and room openings? Will you need ramps, grab bars, etc.? Those will be needed to continue to live a productive life. 

There’s also the cost of therapy, both occupational and physical, and respiratory apparatuses and breathing therapy for those who need it.

The polio doctors who helped the survivors through the initial episode are gone. Very little is discussed in medical, nursing and physician assistant education on polio, much less PPS. 

Thirty years ago, doctors told us that there was no such thing. The biggest problem the survivors have today is finding a physician who can diagnose and treat PPS. Many survivors leave literature explaining PPS for the doctor, but unfortunately, they are not interested. 

There are post-polio support groups across the U.S., and they are hosted by survivors. That’s where survivors can communicate with other survivors and understand their disability. They learn that they are not alone.

Survivors can obtain the Zoom support group list from me at the email address below, or contact Post-Polio Health International at post-polio.org/.

Most of these groups have become international. You can enter most groups without signing up, and meet survivors from the U.S. as well as other countries. You can Zoom with any group in the U.S., two in Canada and one in Australia, regardless of where you live.

REMEMBER: Viruses are not alive. They remain indefinitely. Polio is still here. The only way to protect yourself from getting polio and then post-polio syndrome is by immunization. 

Michael Kossove is Professor Emeritus and an adjunct professor of microbiology at Touro University’s School of Health Sciences. He is a polio researcher, international polio lecturer and polio survivor. He can be reached at Professormike2@aol.com.