Understanding Post-Polio Syndrome: A Clinician’s Guide to Treating a Rare Condition 

Featuring: Allison Ackles, MOT, OTR/L, CBIS, CDP, LSVT; Maureen Colket, MA, CCC-SLP; Savanna Grife, MS, OTR/L, CFPS; Kelley Williams, OTR/L, BCG

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.

Sprouting up in the 1980s, what can you tell us about post-polio syndrome?

Grife: Basically, polio outbreaks occurred throughout the 1940s and 1950s before a vaccine was developed. Decades later, some survivors of polio, approximately 25-40%, according to the CDC, were exhibiting similar symptoms that caused disability and/or significant disruption in their mobility and activities of daily living. The common factor was that they had survived polio as children or young adults. PPS is a gradual deterioration of the neurons that were previously damaged by the initial polio virus.

Williams: Doing the math, a young adult who was 15 years old and infected with polio in 1955 would have the potential to start exhibiting signs of post-polio syndrome 30 years later, in 1985, as a 45-year-old adult. That adult would now be 84 years old and also experiencing other age-related changes, further complicating the diagnosis.

Colket: It’s a hard diagnosis to land on and can be a frustrating experience for patients.

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.

How does the severity of the initial polio infection impact the older adult patient with post-polio syndrome?

Grife: In general, survivors who were severely impacted by the initial polio virus are likely to experience greater disability if they develop PPS later in life.

Colket: The two are correlated in that the more severe the initial polio, the more severe the syndrome later in life. It can even affect the same part of the body in both illnesses.

Williams: Individuals who were older upon initial infection with the disease—adolescents or young adults—as well as those with more severe infection, were at a higher risk of developing post-polio syndrome. Strangely, the research also shows that those who recovered more quickly and fully seemed to be those who are more at risk of developing post-polio. The theory is that the quick recovery of muscle function in those individuals puts increased stress on newly developing motor neurons, which in turn leads to a breakdown in the newly sprouted muscle fibers and motor neurons themselves.

What are some of the complications you have seen in post-polio syndrome?

Ackles: Significant weakness resulting in falls, decreased safety awareness, transfer deficits, and functional mobility deficits.

Grife: Reduced aerobic capacity, limited energy, and weakness can force patients to be more sedentary, which can put them at higher risk for pneumonia, contractures, osteoporosis, and even faster rate of muscle atrophy. Limited endurance can also result in difficulty accessing the bathroom in a timely manner, possibly resulting in urinary or bowel accidents, which can increase risk for urinary tract infections. All of this can contribute to depression, as well.

Williams: I’ve seen not only an increase in the risk of progressive osteoarthritis, but also general joint instability resulting in the need for bracing to assist with load bearing for transfers and mobility. The reliance on devices can then further perpetuate muscle weakness in the muscles around the very joints we are trying to support externally.

Colket: With dysphagia or difficulty with swallowing being a concern, respiratory status is compromised. Patients can aspirate, which can potentially lead to pneumonia.

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!

As a clinician, how do you treat post-polio syndrome?

Ackles: I don’t treat these patients any differently. I focus more on individual deficits instead of medical diagnosis, and focus on building a treatment plan to address individual goals.

Williams: I approach each patient with individualized care. Everyone with the diagnosis may have different degrees of muscle and joint involvement, mobility limitations, and motivations. Just like any other population, each person should be evaluated based on their own unique values and goals. I try not to over-fatigue muscles and overstress joints during treatment. I let the patient guide me based on their pain and tolerance and provide of lot of energy conservation strategies.

Colket: SLP involvement in post-polio syndrome tends to center around voice and swallowing symptoms. The focus is on management and careful use of respiration exercises, being careful not to overwork the system. There is a lot of education involved in strategies to reduce the risk for aspiration, which is done with the patient as well as involved caregivers.

How difficult is it to treat, balancing the need for exercise with a patient’s propensity for fatigue?

Williams: It can be quite tricky. Their presentation can vary based on the previous day’s activities, which can really affect someone’s energy level well into the next day. Not only do we have to consider muscle fatigue, but we also have to consider respiratory limitations. Just like any other muscle, the diaphragm can be affected by the disease, so taking deep breaths for exercise recovery can be more difficult for these individuals. Completing tasks at a lower MET level, using isometrics versus strict weight training, and utilizing functional tasks as a form of exercise can help to reduce onset of fatigue that can occur with strictly exercise-based interventions.

Colket: It is tough when you have to work through finding that right balance and helping the patient to understand—or sometimes the therapist to understand—what that right level of exercise can be. We always want to push our patients to do more, but it’s not always appropriate in these post-polio cases.

Grife: It’s a very delicate balance. We have to find the proper resistance and dosage of exercise that maintains or builds strength and endurance, but at the same time will not overly fatigue them, which could cause even more interruption in their daily functioning, since they are susceptible to severe fatigue. We also have to make sure the exercise does not exacerbate their joint or muscle pain that already exists. We have to monitor vitals, pain response, and fatigue to know when a rest break is appropriate. It is important to remember that PPS patients may require increased time for muscle recovery after exercise.

Ackles: It’s important to work with each individual instead of trying to categorize individuals by diagnosis. Each person presents differently and has individual needs, as well as different goals and targets. Co-morbidities all impact performance and need to be considered when balancing treatment interventions and fatigue.

How much does exercise or strength training help?

Williams: Strength training particular muscle groups can help with reducing joint strain in other areas. For example, increasing core activation during mobility can help to reduce strain to the lower back muscles and shoulder joints when using mobility devices. Isometrics can also help to reduce joint strain while allowing the patient to control the intensity of muscle activation based on current pain levels. In these cases, strength training has to be a much slower process with more time to assess for negative responses and time to adjust the program for long-term success.

Colket: In dysphagia treatment, there is minimal strength training, if any, that works. The act of eating requires high energy demands, so that is the exercise right there! My focus in post-polio cases tends to be on respiration exercises as these are gentler on the system, yet very effective when done properly.

Grife: Part of the problem with PPS is that evidence-based resources are hard to come by, but from the research I’ve found and from my own experience working with a patient, an appropriate dosage of exercise can actually manage pain, prevent muscle atrophy, improve breathing and endurance, and prevent functional decline.

As a clinician, how do you help a patient adapt with ADL training?

Colket: As a speech-language pathologist, I refer to my amazing OT and PT colleagues!

Ackles: With ADL re-training, it depends on what areas are affected by post-polio. For some folks, compensatory strategies may be beneficial, like using adaptive equipment for patients with immobility or positioning modifications to facilitate ease of reaching and moving with decreased fall risk.

Grife: I educate them on energy conservation strategies.

Williams: Adaptive equipment for bathing and dressing goes a long way toward helping reduce both joint strain and over-fatigue of muscles that can occur when attempting to do things like bend over to thread legs into pants. My favorite tools in these cases are dressing sticks, reachers, sponges, and sock aids—your basic OT tool kit! I also recommend adjustable height shower chairs with arm rests and back support to allow for showering while also providing a surface that can comfortably accommodate the process of taking a bit longer. Lastly, the positioning of items is key to reducing fatigue, joint pain/strain, and risk for falls.

Helping a patient who has post-polio seems like an ideal opportunity for interdisciplinary collaboration. Did you ask for help?

Grife: Yes, it’s a great opportunity for interdisciplinary collaboration! While I was unable to connect with someone directly who had worked with a patient who had PPS, I was able to pick the brains of my colleagues about how to address certain barriers I was facing in treatment sessions. My colleagues suggested treatment ideas and techniques I hadn’t thought of that I was able to trial with my patient.

Colket: Yes! PT and OT were heavily involved in each case I have seen with post-polio syndrome. We collaborated on things such as positioning as well as scheduling, so a patient wouldn’t have two therapy sessions on the same day.

Williams: My PT partner and I collaborated quite often when working with my most recent patient. She knew that I was concentrated on decreasing their shoulder pain, so her focus was on increasing core muscle activation to reduce over-reliance on their arms when walking. We were both focused on helping with the transition to a power wheelchair, so in collaborating on this case, we decided that I would focus on my patient being able to move throughout their apartment, into the kitchen, and in and out of the bathroom. My PT counterpart would focus more on community-level mobility and obstacle negotiation. We spoke often about progress, future plans, and limitations in our treatment. Having collaboration in this case was invaluable, given the fact that post-polio syndrome is so rare.

Ackles: In the community where I work, FOX clinicians collaborate consistently with patients, especially with ones we share to make sure we are providing the best care to each and discussing what works and what doesn’t on all of our cases.

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.

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?

Williams: I hope so! Advancements in medicine and the availability of vaccines will hopefully someday make this disease a thing of the distant past!

Ackles: Polio/post-polio is still an issue, as many third-world countries are not vaccinated, and there are cases of polio that pop up through those who are not fully vaccinated. Also, with the anti-vaccination campaigns, more folks are choosing not to become vaccinated, which places a large risk on the virus not fully going away.

Colket: I sure hope so, but we will have to continue to be informed on this!

Grife: Yes, this is great news! With the vaccine, polio is essentially eradicated in most developed countries. So, hopefully, there will be a day when we don’t have to worry about PPS anymore!

What’s the most important message to instill in your patients with this diagnosis?

Colket: Educate yourself and surround yourself with a supportive team. Patients with this diagnosis should think of their therapy team as they do a primary care provider—we’re here for you when you need us!

Williams: I think it’s important for them to know that as the disease and its complications progress, we will progress with them. We will continue to modify and adapt to support their needs on any given day and through all stages of life.

Grife: Management of this condition is possible! Your PT, OT, or SLP can conduct a thorough evaluation to determine how therapy can help to maximize your quality of life and manage your symptoms, so that this syndrome does not control you.

Also, don’t give up! Finding the lifestyle modifications or activities that are appropriate for you can take time with trial and error. Each person with PPS is different, so make sure to identify your personal goals, figure out what works best for you to manage this syndrome, and then communicate that information to your healthcare providers, friends, and family, so that everybody can help facilitate your success. It is a team effort!