Post-Polio Health Care Considerations for Families and Friends

Post-Polio Health International


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II. Late Effects of Polio: The Medical

A. Polio: The Disease

Poliomyelitis (polio) is a viral illness that begins suddenly with flu-like symptoms of fever, headache, vomiting and/or diarrhea, muscle aching and "feeling poorly." The virus enters the body through the stomach and intestines. In some people (about 10% of cases), the virus can enter into the central nervous system (the brain and spinal cord) and produce damage to motor nerve cells, whose function is to instruct muscles to move. About 1-2% of people who get the infection develop some lasting weakness from dying of motor nerve cells. The amount of lasting weakness depends on how many motor nerve cells die and can vary from a small amount (only a few muscles are a little weak) to a large amount (most muscles are very weak or completely paralyzed).

After the initial infection symptoms improve, most people begin a stage of recovery and healing. In those with only a relatively small loss of nerve cells going to a muscle (30-50%), weakness can improve slowly and reach the poit where strength is again enough to allow survivors to use their arms and legs for usual daily activities. In survivors left with a lot of weakness in many muscles, recovery of muscle strength and ability to function may be very slow and can involve many years of rehabilitation treatments, including physical therapy, use of assistive aids, such as braces, crutches, wheelchairs, ventilators and surgeries.

Most polio survivors worked very hard to make as good a recovery as possible and were helped and encouraged by their parents, friends and medical professionals. Improvements usually continued for two or more years. Polio survivors, such as your loved one, eventually reached a "period of stability" when muscle strength and functional abilities did not improve. For those people who had polio as infants or young children, rehabilitation efforts continued throughout their childhood and teenage years, and they most likely gained their best possible functional abilities after 2-18 years of rehabilitation.

More ...

History of Polio (PHI's Handbook on the Late Effects of Poliomyelitis
for Physicians and Survivors

What is poliomyelitis? (Centers for Disease Control)

Poliomyelitis in "The Pink Book" (Centers for Disease Control)

B. New Symptoms after Stability

Many people with a history of paralytic polio (polio infection resulting in lasting weakness) begin having new symptoms (complaints and problems) related to muscle strength and functional abilities after a stable period of 15 or more years. The most common complaint is fatigue, described as either "no energy or being too tired" to do any physical activity (being fatigued), or tiring out very fast after doing even just a little physical activity (having rapid fatiguability), or both. Fatigue and rapid tiring out may be limited to only certain muscles or may be exhaustion throughout the whole body.

The second most common symptom is new weakness of specific muscles. Your parent or loved one may experience a decline in their "personal best" strength of muscles that they always knew had been weakened by their old polio as well as muscles that they thought had not been affected by the polio.

Some muscles may shrink and become smaller, a condition known as atrophy. Even a small amount of loss of strength in some muscles may make a big difference in a person's ability to carry out daily activities even though the percentage of loss of strength may not be large based on one's personal best. What is important is how this loss of strength affects the ability to function, e.g., get on and off the toilet, get out of a chair, roll over in bed, put on shoes, tie them, etc.

The next most common symptom is pain. There are many reasons for polio survivors to develop new aches and pains as they become older living with their polio weaknesses and polio-related abnormalities of arms, legs and spine. An unusual amount of aching and soreness in the muscles after extensive use or doing specific activities is a special problem among polio survivors. This aching suggests "overuse" of muscles by asking them to do repeatedly more than they are capable of doing.

Other common symptoms are new breathing problems, choking and swallowing problems, and the inability to tolerate cold places. Any or all of these common new symptoms may reduce or limit polio survivors' ability to carry out their usual daily activities. For polio survivors who were more extensively affected, these "symptoms" are not new, but increased, i.e., additional weakness, more difficulty in swallowing, less and less ability to tolerate cold places.

C. 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.

More ...

Remember Polio? Have you heard about the late effects of polio? (

What is Post-Polio Syndrome? (

D. Aging with Polio

Due to recent advances in medical rehabilitation, emergency medicine and consumer education, for the first time in history persons with disabilities, like their non-disabled counterparts before them, are surviving long enough to experience both the rewards and challenges of mid- to later-life.

Aging with polio's after effects does not come without its problems. In exchange for the personal benefits of increased longevity, many polio survivors experience new, often unexpected health problems that result in changes in their ability to function and threaten to diminish their independence and quality of life.

The development of PPS symptoms has received the most attention, but the health risks are not limited to these problems. Living with the long-term effects of polio also places survivors at potentially increased risk for age-related chronic diseases and health conditions, such as diabetes, high blood pressure, heart disease, bronchitis and emphysema, osteoporosis and obesity, to name a few. While these conditions affect the rest of the aging population, they may occur more frequently and at younger ages for persons with disabilities, due to their "narrower" margin of health and the barriers they face for maintaining good health.

Both PPS and other age-related chronic conditions can speed up the aging process and result in loss of function at an earlier age than expected. Being aware of these risks can be helpful because it encourages preventive steps and services. Acknowledging these potential problems allows survivors and you, their families, to prepare for changes without the stress and fear that comes from sudden and completely unexpected changes.

More ...

Living with Disability: Approaching Disability as a Life Course – The Theory
(PHI's Sixth International Conference, 1994)

E. Maintaining Health and Wellness

Good health is being the best that one can be – physically, mentally, spiritually, emotionally and socially. Polio survivors do not need to constantly struggle from one health crisis to the next. While some health problems require professional assistance, your parent or friend can manage others. In addition to seeing appropriate health professionals to alleviate and manage the late effects of polio and other unrelated diseases, another aim of you and your polio survivor parent is to improve their day-to-day overall sense of wellness and ability to participate in life.

Most of the ideas about staying well are the same for all people whether they have a disability or are nondisabled, but a wellness program needs to be personalized. One size does not fit all.

Not paying attention to safety issues can cause more suffering than many diseases. Remind everyone in your family always to use a seat belt. If there is a gun in the house, store it safely. With aging, problems with hearing and sight develop. Be sure the smoke detector batteries are working and that your parent can hear them. Increase lighting, especially on the stairs. Check your parent's bathroom for grab bars and other safety devices, such as a raised toilet seat. Check all the rooms for unnecessary objects that may cause a fall, such as throw rugs and electric cords.

Encourage your parent or friend not to use tobacco or illegal drugs, to drink alcohol in moderation, if at all, and to practice safe sex.

It is vital to eat a healthy diet and to exercise to maintain strength, burn calories, decrease insulin resistance and prevent osteoporosis. Osteoporosis is a common problem that may affect all people age 50 and older. Osteoporosis is an important issue for polio survivors, because the polio-affected areas have less bone mass and weaker bones because of the lack of "normal" weight bearing. Polio survivors will fall more often than others. If they break their "good" hip or fracture an arm that they depend on to assist in walking with canes, crutches, or to propel a wheelchair, or for transferring, it will tremendously impact their lives.

Research has shown that calcium and vitamin D are important for strong bones and most people don't take in enough of either on a daily basis. The current recommendation for adults over 50 is to take in 1,200 mg per day of calcium. Experts recommend a daily intake of 600 IU (International Units) of vitamin D. Sources include sunlight, supplements or vitamin D-rich foods such as egg yolks, saltwater fish, liver and fortified milk. The Institute of Medicine recommends no more than 4,000 IU per day. However, sometimes doctors prescribe higher doses for people who are deficient in vitamin D.

To stay in the best health, polio survivors should see their primary care physician regularly for preventive care. This visit should include measurement of height, weight, cholesterol and blood pressure. More and more physician's offices have examination tables that raise and lower to accommodate those in wheelchairs or with mobility problems.

Preventive care includes age and sex specific considerations, such as testing for colorectal cancer for people age 50 or older. For men, it is advisable to have prostate tests and possibly the blood test PSA (prostate specific antigen) done. Women need to have breast exams, mammograms, pelvic exams, Pap smears and discussion of the pros and cons of hormone replacement therapy.

Family physicians will monitor adult immunizations, such as diphtheria/tetanus once every 10 years, and for persons with respiratory conditions, and/or age 65 or over, a pneumonia vaccine. One pneumonia shot is good for at least 6 to 10 years. Ask about the shingles (herpes zoster) vaccine if your parent had chicken pox. The varicella-zoster virus (VZV) causes chicken pox and because it remains in the nervous system for life, it can cause shingles. Polio survivors should get the annual flu vaccine, unless there are reasons not to, such as an allergy to eggs. There has been no research to suggest that polio people should not have a flu vaccine or a shingles vaccine based on the fact they had polio.

Your parent's primary care physician and/or appropriate health care professional will be able to offer advice on all of these important issues.

Being well includes good mental health. Sometimes physical problems overshadow mental health issues, such as the anxiety disorders, manic-depressive illness, eating disorders and depression, because they are more easily discussed and more accepted by society. Addressing these issues will have an impact on the health of your loved one and on the family unit.

Surveys, interviews and books telling life stories reveal that polio survivors, in general, credit their acute polio with building character and developing the habit of working hard. It also taught them to appreciate others and increased their awareness and insights contributing to their spiritual growth. The literature notes a minority who clearly express that having had polio is the cause of their bitterness and pain.

The changes that inevitably come with aging can lead to social isolation. Thinking back about the polio experience can be emotionally upsetting. Both social isolation and emotional reacitons to the late effects of polio are common. Post-polio support groups that meet face-to-face or online can help, as well as individual and family counseling.

More ...

National Institutes of Health, Wellness & Lifestyle

National Institute of Mental Health

Support Groups, with their usual meeting schedules, and resource individuals

Online discussion lists with a short description of their focus.

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