Understanding Post-Polio Syndrome: A Clinician’s Guide to Treating a Rare Condition
Allison Ackles, MOT, OTR/L, CBIS, CDP, LSVT; Maureen Colket, MA, CCC-SLP; Savanna Grife, MS, OTR/L, CFPS; Kelley Williams, OTR/L, BCG, Fox Rehabilitation Services
“Polio (short for poliomyelitis), is a highly contagious viral disease that primarily affects young children, often leading to paralysis, respiratory difficulties, or even death. The disease wreaked havoc across the globe for centuries, with outbreaks occurring sporadically and causing widespread fear. By the mid-20th century, however, scientific advancements brought hope with the development of vaccines. In 1955, Dr. Jonas Salk introduced the inactivated polio vaccine (IPV), and in 1961, Albert Sabin’s oral polio vaccine (OPV) furthered the cause. These vaccines ushered in a new era of public health, drastically reducing the incidence of polio in many countries, including the United States.
By the early 1970s, the U.S. had all but eradicated polio thanks to mass vaccination campaigns. However, despite this landmark success, a new and unforeseen medical phenomenon began to emerge in the 1980s: Post-Polio Syndrome (PPS). Survivors of polio started experiencing new, debilitating symptoms decades later.
Post-polio syndrome is a collection of symptoms that occur 15 to 40 years after the initial polio infection. Those who had previously experienced polio often found themselves struggling with muscle weakness, fatigue, and joint pain, as well as other neurological complications. This condition posed a puzzle for doctors and polio survivors alike, as it wasn’t immediately clear why the effects of polio were reappearing after so many years of stability.
The emergence of PPS in the 1980s reignited conversations around the polio virus, reminding the public that while the virus itself may be on the decline, the aftereffects for many survivors are profound and long-lasting. These new symptoms were a painful reminder that the fight against polio was not entirely over. In many countries, as polio becomes an increasingly distant memory, PPS remains an important aspect of the medical community’s understanding of the disease’s lasting consequences.
Today, we share a conversation with four FOX clinicians who have worked with patients diagnosed with post-polio syndrome. Because there is a general lack of information surrounding PPS, many healthcare professionals only find out about it for the first time when they have a patient struggling with the condition. The diagnosis of PPS—and just hearing the word “polio” again—is also a shock to patients and their family members.
Our panel explains how they found out about PPS, how they conducted their own research, and the strategies they implement when working with a patient who has been diagnosed with it. The following conversation gives us an illuminating look into an uncommon condition and provides much-needed information on a topic that is still a mystery to most.
Let’s start by talking about polio. The Polio Pandemic peaked in the U.S. in 1952. It’s a virus - when at its worst, it can cause paralysis or death.”
Going through school, What did you learn about Polio or Post-Polio Syndrome?
Williams: “I can remember learning about the widespread panic and devastation caused by polio, the big push to create a new vaccination, and possibly the silver lining, the fact that it necessitated the creation of new, better medical equipment that allowed people to maintain some degree of mobility, either self-propelled or allowing family and caregivers to move people throughout their homes and communities.”
Ackles: “Post-polio and polio were vaguely mentioned in my occupational therapy program. I think we did not spend an extensive amount of time addressing this diagnosis as it’s not as prevalent as other viruses that we traditionally see.”
Grife: “Nothing! I certainly don’t remember discussing it in school, but for the sake of being thorough, I just dug out my textbook. There are only two pages—out of 1,241 total pages—where PPS is discussed.”
When you became a Clinician, Did you even know that Post-Polio Syndrome Existed?
Colket: “No, I had never heard of post-polio. I learned about in the midst of treating one of my favorite patients that I’ve ever had with FOX. (Yes, it’s true, we have favorites.)”
Ackles: “I had previously worked with a patient at a post-rehab personal training client to address weakness, transfers, and safety.”
Grife: “No, when I received a therapy order for my first post-polio patient, I had to do lots of research before the initial evaluation so I would know what to expect.”
Williams: “Yes, I was aware that post-polio existed and was actually exposed to a patient with post-polio early on in my career at a rural hospital with a one-hallway rehabilitation unit. At that time, I still don’t think I fully understand the functional implications of the diagnosis over the lifespan. As a clinician who has now been practicing for over 15 years, I can still count on only one hand how many individuals I have encountered with post-polio syndrome.”
What are the Symptoms?
Williams: “One of the primary symptoms of post-polio syndrome is muscle weakness, since the original polio virus attacked motor neurons in the spinal cord. Joint pain is also a prevalent symptom, often exacerbated by the onset of osteoarthritis—as part of the natural aging process—and possibly by additional stress to joints with the use of mobility devices. Muscle fiber atrophy, fatigue, and decreased activity tolerance are also common symptoms of post-polio syndrome.”
Colket: “A patient will demonstrate fatigue and can easily be inexplicably exhausted. They have muscle weakness and can also have difficulty with swallowing.”
Ackles: “Typically, I’ve seen weakness and decreased motor control most often impacting one side more than the other.”
Grife: “Also, muscle atrophy, joint pain, sleep disturbances, and swallowing difficulties.”
It doesn’t seem fair, right? Someone had Polio when they were younger and now, they have to deal with this as an older adult?
Grife: “It is totally unfair, and there are limited resources out there to help these adults figure out how to manage life with these new debilitating symptoms.”
Williams: “This is definitely the kicker! I imagine what a blessing it must have been for someone with the polio virus to finally feel as if they were getting their life back after such a devastating illness, only to then have it all stripped away years later as the disease circles back.”
Colket: “So very true, but what I have seen is that those who overcame polio in their younger years carry it like a badge of honor, and they sure are fighters!”
Do you feel there is a sufficient amount of information out there about Post-Polio Syndrome?
Grife: “No! Like I said before, I feel general awareness of the condition is lacking, since I hadn’t even heard about it before. I also remember spending a significant amount of time trying to find reliable resources and evidence-based information to figure out how to help my patient. I had to be honest with my patient on evaluation day and say something like, ‘I’ve done a lot of research on your condition before today, but I have never treated anybody with post-polio syndrome before.’ I feel that being upfront with my patient on Day 1 actually helped us build rapport, because I established the understanding of ‘You teach me about your condition, I’ll teach you what I know, and we will both learn together and figure out what works.’ Fortunately, she was totally on board with that.”
Williams: “Yes and no. I think there is a great deal of solid information about the disease; you just have to search for it. It’s not as visible or common as something like Parkinson’s disease or arthritis.
Colket: It was not too difficult to find information once I started looking for it; however, it seems that it takes a long time for doctors to come to this diagnosis, and that the responsibility falls on the clinicians to educate their patients regarding symptom management.”
Read On For the Following Topics of Discussion:
“Sprouting up in the 1980s, what can you tell us about post-polio syndrome?”
“How does the severity of the initial polio infection impact the older adult patient with post-polio syndrome?”
“What are some of the complications you have seen in post-polio syndrome?”
“As a clinician, how do you treat Post-Polio Syndrome?”
“How difficult is it to treat, balancing the need for exercise with a patient’s propensity for fatigue?
“How much does exercise or strength training help?”
“As a clinician, how do you help a patient adapt with ADL training?”
“Helping a patient who has post-polio seems like an ideal opportunity for interdisciplinary collaboration. Did you ask for help?”
“The good news is that polio isn’t as prevalent today as it was back then. Will we live to see a day when post-polio is no more?”
“What’s the most important message to instill in your patients with this diagnosis?”