Late-Effects of Polio, The Medical. From PHI
From Post-Polio Health International
Post-Polio Syndrome
Post-Polio Syndrome (PPS) is the name given to the group of common new symptoms (fatigue, new weakness and pain) experienced by polio survivors. The definitive symptom is new weakness that is clearly not a result of another non-polio condition. Most post-polio specialists think that PPS results from a slow worsening in the ability of polio survivors' nerves and muscles to work properly as they become older and/or their health declines.
Medical research has not proved definitively what brings about PPS in some polio survivors and not others. As a result, experts disagree on whether PPS is really a "new disease" or a "condition" of declining strength and function that commonly happens as polio survivors become older and develop other new health problems. PPS is the diagnosis made when physicians look for and treat all of a survivor's symptoms (pain, weakness, fatigue, etc.) assuring that the non-polio related conditions that may cause the same symptoms are cured or managed.
Because there is no cure or specific treatment for PPS, the answer to this disagreement about "'names" or "labels"' is not the important issue. Treatment of PPS symptoms must always be specific to an individual's needs. The treatment will depend on how bad the specific symptoms are and how they affect a survivor's most important functional abilities.
Late Effects of Polio: The Psychosocial
Are you struggling with finding out that you have PPS? Are you in denial about what seems to be obvious changes in your functioning? Many polio survivors have difficulties adjusting to new disabilities. Some people with PPS find that they are now reliving their childhood experiences with polio and that can be traumatic and even terrifying.
Because of the relatively small number of polio survivors, many physicians see very few, if any, and know very little about PPS. Some still believe that the condition is only in their patients' heads. People with PPS often depend on their own resources to help them cope with this condition, because there is a lack of proper medical and psychological advice.
Fortunately, PPS continues to gain attention in the medical community. A growing number of health care professionals understand PPS and can provide appropriate medical and psychological help. In addition, there are PPS support groups, newsletters and educational networks that provide up-to-date information about PPS while offering individuals the knowledge that they are not alone in their struggle.
Professional Assistance
Many polio survivors feel that health professionals are unprepared to treat them and carry with them a level of distrust. Because of passage of time, it is unreasonable to lament that my physician "never saw the original polio." Asserting, "post-polio is never taught in medical school" is counterproductive. Medical schools teach about the acute polio infection and that it results in residual weakness. In the past, health professionals thought that polio weakness was static or stable, but most professionals today know from research and observation that it can be slowly progressive.
Many physicians are aware that there can be new weakness, but they have not seen it in many of their patients. In fact, many have never treated a person who had polio, which is why PHI makes resource materials readily available to both health professionals and lay people.
While some of the lay post-polio literature emphasizes the uniqueness of the medical problems of polio survivors, it may be overemphasized. The advice and procedures for treating common medical problems for those who did not have polio are the same for post-polio people. However, it is important to advise medical professionals you had polio (a neuromuscular disease), so they can integrate this knowledge into a treatment plan. If you have a "post-polio physician" or a pulmonologist, who monitors your breathing status, always seek advice from them when facing other medical issues. Survivors are encouraged to actively facilitate the connections between the medical specialists involved in their care.
Start with the family physician. Following is a list of other health professionals who you may call upon.
Family Physician
Health care reform is leaning towards the coordinated care model. A primary care health provider (nurse practitioner, physician's assistant, family medicine doctor or internal medicine doctor) most likely will be the coordinator of your health care.
Getting to know a primary care health provider, and them getting to know you as a person as well as a patient, can be very valuable and assures prompt appointments in an emergency. Established patients generally have priority over unknown patients when the schedule is busy.
Primary care physicians perform certain technical procedures, determine what is wrong, and offer reassurance after an annual physical, that many things are very right. They also provide advice on how to take care of problems or to stay healthy.
Not all primary care physicians know about polio or post-polio. Some are willing to learn, and some are not.
Value a physician who says, "I do not know" and who gets out the books or gets on the phone and asks someone else. A physician who says they know it all is one to avoid. (At least 50 different high blood pressure medicines, about 100 different antibiotics, and 40 different birth control pills are now available.)
Most primary care physicians schedule a patient every 10 to 20 minutes. Schedule more time if there are many issues to discuss. Many now have at least one exam table that goes up and down. Advise them if you will need it, so they can schedule it.
Write down questions and concerns. Don't save the most important issues for the end. It is also helpful to bring a list of medicines and dosages. Take in medicines. Take in the facts.
It is also useful for the primary care physician to know the number and type of orthopedic surgeries and the respiratory history, i.e., in an iron lung during the acute phase of poliomyelitis, use a bi-level device at night, etc.
Some primary care physicians return phone calls and will most likely continue to do so, if they know that you will respect their time and keep the conversation short.
Health Care Specialists
There is no official certification for a "polio doctor." The most common use of this informal designation is a physician with knowledge, experience and interest in evaluation and treatment of polio survivors.
Given the most common new disabling medical problems of polio survivors, physicians with expertise in neuromuscular disease management that includes the ability to recognize and treat chronic musculoskeletal pain and respiratory problems are ideal. The specialty background of these physicians is most commonly neurology, physical medicine and rehabilitation, orthopedics and family practice. Polio survivors do not need to see a "polio doctor" to receive good care. However, if you are experiencing a series of new unexplainable and disabling symptoms and are unable to obtain satisfactory help, then seeking an evaluation by a polio doctor/post-polio clinic can be very helpful. These physicians most commonly will provide consultation services to your primary care physician and may provide continuing comprehensive follow-up of post-polio related problems.
Many survivors need a network of medical providers (orthopedist, pulmonologist, orthotist, physiatrist, neurologist, etc.) and may need help with coordination and communication among them. A primary care physician can fill this role, although many polio survivors do this function themselves, because they are sufficiently sophisticated with medical and rehabilitative issues. You may need to consult with a trusted family member/friend so they can help you assume this role at certain times.
The best way to frame the issue is this. Are your current providers meeting your medical and rehabilitative needs? If they are not, then specialist consultations are appropriate. If they need a comprehensive evaluation of medical concerns and functional changes, then seeing a "polio doctor" is invaluable.
“Here is a list, in alphabetical order, of specialists who may be involved in post-polio care.
Behavioral health specialists are psychologists, social workers, licensed counselors, marriage and family therapists, or even members of the clergy. All behavioral health specialists know about depression, anxiety and coping with life changes. Some have a special interest in working with the elderly, people with disabilities, and/or trauma survivors. Rehabilitation psychologists and counselors and geropsychologists are examples of specialists in the first two areas.
Geriatricians have special training in treating the elderly. They focus on improving the health, independence and quality of life of older people. There are 6,400 "geriatric specialist physicians" practicing in the US, and they may be hard to find, but the field of geriatrics includes not only physicians, but physicians' assistants, registered nurses, nurse practitioners and long-term care nurses.
Medical social workers (MSWs) provide psychosocial support to individuals, families or vulnerable populations so they can cope with chronic, acute or terminal illnesses. They also advise family caregivers, counsel patients and help plan for patients' needs after discharge from hospitals. They may arrange for at-home services, such as meals-on-wheels or home care.
Neurologists are physicians who diagnose and treat disorders of the nervous system. They address diseases of the spinal cord, nerves and muscles that affect the operation of the nervous system. An important aspect of a neurologist's daily duties is to offer advice to other physicians on how to treat neurological problems.
Occupational therapists (OTs) enable people to live life to its fullest by helping them promote health and prevent – or live better with – illness, injury or disability. OTs work in hospitals, skilled nursing facilities and other places that treat people who are aging, and in rehabilitation centers and health and wellness facilities. They assess how a person accomplishes tasks and suggest better ways. Such tasks include getting on and off the toilet, in and out of a car, chair or bed, swallowing and driving, etc.
Orthopedists are physicians who specialize in the diagnosis and treatment of disorders of the bones, ligaments, tendons and joints. Setting broken bones, repairing and replacing joints (such as knees and hips), straightening spines and developing prosthetics to replace body parts are specialized skills of this specialty.
Orthotists (a.k.a. certified orthotist – CO; certified prosthetist and orthotist – COP; certified prosthetists – CP) evaluate and treat musculoskeletal disorders by designing and fitting custom-made orthoses or braces. Orthotists work to restore mobility and prevent or limit disability. Be aware that no one specialty "owns" bracing anymore and many specialties get very little training in prescribing braces. However, bracing is always included in the training of physiatrists. Check with the insurance company to see which medical specialty needs to write the prescription.
Physiatrists, or physical medicine and rehabilitation (PM&R) specialists, are physicians who are experts at diagnosing and treating pain and at maximizing function lost from injury, illness or disabling conditions through provision of non-surgical treatments and coordinating a team approach with other physicians and rehabilitation professionals. They treat the whole person and focus on not only treatment but also on prevention.
Physical therapists (PTs) help improve improvement and alleviate pain as an alternative to surgery or pain medications. PTs also treat new weakness and loss of mobility for tasks such as walking, climbing stairs and transferring. They teach patients how to prevent or manage a health condition and are uniquely qualified to help design appropriate fitness programs to promote health and wellness. Physical therapists provide care for people in a variety of settings, including hospitals, private practices, outpatient clinics, home health agencies, schools, sports and fitness facilities, work settings and nursing homes.
Pulmonologists are physicians who specialize in the diagnosis and treatment of diseases and disorders of the lungs and respiratory system. Because of the variety of clinical problems encountered, they have knowledge of internal medicine. They are also known as respiratory physicians and respirologists.
Respiratory therapists (RTs) work to evaluate, treat and care for people with breathing disorders. Most respiratory therapists work in hospitals where they perform intensive care, critical care and neonatal procedures. An increasing number of respiratory therapists work in skilled nursing facilities, physicians' offices, home health agencies, specialized care hospitals, medical equipment supply companies and patients' homes.
Speech and language pathologists (CCC-SLP), sometimes called speech therapists, assess, diagnose, treat and help to prevent disorders related to speech, language, cognitive-communication, voice, swallowing and fluency. Speech-language pathologists use special instruments and test to analyze and diagnose the nature and extent of the problems.”
Source: Portions of this article were modified from the original and published with permission from Post-Polio Health International April, 2026
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