Post-Polio Health Care Considerations for Families and Friends

Post-Polio Health International


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IV. Management/Treatment Ideas

A. Pain

Pain in muscles and joints is a major issue for people with PPS and typically, the first or second most common symptom reported to health professionals. Pain can be due to any number of factors and polio survivors who are experiencing pain should undergo a comprehensive evaluation to diagnose its cause. Successful management strategies focus on improving abnormal body mechanics and postures, supporting weakened muscles with bracing, trying targeted exercises, and promoting lifestyle changes, e.g., weight loss, that improve health and wellness and prevent further episodes of pain.

It is possible to reduce or eliminate the vast majority of pain symptoms once the underlying cause has been determined, and if the individual is willing and able to make recommended changes. Total relief of pain is usually difficult to achieve due to the continued stress and strain associated with activities of daily living.

Post-polio health care professionals describe three different types of pain in polio survivors.

Biomechanical Pain

Pain that results from poor posture is the most common type of pain reported by polio survivors. Weakness in polio-affected muscles (particularly the legs) often leads to poor muscular balance and skeletal alignment. Years of walking on unstable joints and tissues makes polio survivors more likely to develop degenerative joint disease. Nerve compression syndromes like carpal tunnel at the wrist and "pinched nerves" in the neck and back may develop from years of altered body alignment.

The treatment for biomechanical pain is improving posture and body mechanics to help decrease the stress on unstable or degenerating joints. Simple adaptations recommended by a qualified health care provider, such as a physical therapist, can modify posture. The table below provides suggestions to improve common alignment issues, which can cause biomechanical pain.

Biomechanical Pain

Ideas to Improve Alignment
Knee pain from "back knee" in the weak leg or in the "good" leg from overuse Brace for "back knee"; use of cane to unload stress on "good" knee
Low back pain due to abnormal leaning to one side when walking (result of one-sided hip weakness) Cane held in opposite hand to increase stability and reduce leaning
Carpal tunnel from using a cane Use ergonomic handles or two canes to minimize stress on painful wrist
Poor sitting posture due to hip muscle imbalance (one side is smaller than other) Small portable pad placed under buttock when sitting

If a loved one is reporting pain with repetitive activities or positions (standing, sitting, walking long distances, etc.), the pain may be due to poor biomechanical alignment. Encourage them to seek the assistance of a health care provider knowledgeable about post-polio syndrome. Avoid encouraging your loved one to "push through the pain" as this may actually increase their discomfort.

Overuse Pain

The second most common type of pain reported by polio survivors is pain that is due to overuse of soft tissue. Muscles unaffected by polio, as well as those only mildly affected, and tendons, bursa and ligaments are all vulnerable to overuse pain. These structures are often overused to accommodate for weakened polio muscles resulting in strains, sprains and inflammation. Tendinitis, bursitis and myofascial pain are examples of painful overuse conditions. The table below offers two examples of painful conditions that may develop and ideas for solving them.

Overuse Pain

Problem Activity
Ideas to Reduce Pain
Shoulder (rotator cuff) injury from pushing up body weight using arms Getting up/down from chairs, toilets
  • Elevate seat height
  • Install/use grab bars
Upper arm muscle pain (biceps tendinitis) from pulling body weight up stair rails (due to leg muscle weakness) Climbing stairs, e.g., to bedroom
  • Move bedroom to first floor
  • Install stair lift

Treatment for overuse pain includes rest and support for the overused body part. Physical agents such as ice or heat, ultrasound and transcutaneous electrical nerve stimulation (TENS) may help reduce the symptoms. Modification of the activity that causes the pain is the best way to provide long-lasting relief. Often rest is not possible since many survivors rely on upper extremities for both getting around and self-care.

If it is impossible to give complete relief to parts of the body, then encourage pacing. Many polio survivors need to be convinced to slow down. Let them know it is OK that certain jobs are unfinished. This is a good time for all of you to observe what is being done, by whom and how. Is there a better way? In rare cases, steroid injections or surgery may help.

If your loved one is experiencing overuse pain, encourage them to seek the assistance of a health care provider knowledgeable about post-polio syndrome. Again, avoid encouraging them to "push through the pain" as this may actually increase their discomfort.

Post-polio Muscle Pain

Survivors describe post-polio muscle pain as burning, cramping or a deep ache. This type of pain is usually associated with physical activity and typically occurs at night or at the end of the day. Muscle cramps and/or fasciculations (muscle twitching) are indicatiosn of overuse of polio muscles. In the table below, you will find a few examples of how to reduce post-polio muscle pain.

Post-polio Muscle Pain

Problem Activity
Front of the thigh
Standing for long periods
  • Alternate sitting and standing
  • Evaluate for orthotics, assistive devices, etc.
  • Do stretching exercises to help change position
Calf (gastrocsoleus) twitching or pain Walking long distances
  • Reduce walking distances
  • Evaluate for orthotics, assistive devices

Survivors and health professionals use a variety of medications to treat post-polio muscle pain. The most common on es tried are of little use. Examples in clude the nonsteroidal antiinflammatories (NSAIDS – aspirin, ibuprofen and naproxen), acetaminophen (Tylenol), benzodiazepams (Xanax, Valium) and narcotics.

Experience shows that tricyclic antidepressants (TCAs), especially amitriptyline, can help with easing pain and decreasing fatigue.

Decreasing activity of the painful muscle(s) throughout the day is the best way to manage post-polio muscle pain. An evaluation for the need for orthotics (braces) and/or assistive devices (canes, crutches, scooters) and their appropriate use may also help to reduce post-polio muscle pain.

If you notice that your loved one is complaining of pain at the end of the day or if you notice muscle twitching in polio muscles accompanied by pain, the cause of the pain is most likely from overuse of the polio muscles and the best course is decreasing activity throughout the day.

More ...

Pain in Post-Polio Syndrome (Post-Polio Health, 1997)

Pain (PHI's Handbook on the Late Effects of Poliomyelitis for Physicians and Survivors)

How to manage pain (The Post-Polio Task Force, 1997)

Successful Bracing Requires Experience, Sensitivity (Post-Polio Health, 2010)

B. Weakness

New muscle weakness is the hallmark of PPS and is associated with the effects of aging on muscles already weakened by the effects of polio. New muscle weakness is more likely to occur in muscles most affected during the acute poliomyelitis. However, occasionally "previously unaffected" muscles may also develop some new weakness. Polio could have affected "previously unaffected" muscles during the initial illness, but the new weakness is not apparent until aging makes it evident.

As a rule, new muscle weakness parallels a decline in a polio survivor's ability to do certain activities. For example, a decrease in strength of the quadriceps (front thigh muscle) may correspond with increased difficulty climbing stairs or walking long distances. Individuals may also experience problems with breathing and/or swallowing. The course of new weakness is variable with some individuals experiencing a slow, continuous progression while others report a stepwise course with plateaus between periods of progression.

Disuse weakness may occur if there has been a change in lifestyle and the individual has been more sedentary. For example, a change in work responsibilities or a recent hospitalization may result in this type of weakness. A trial of carefully monitored exercises may improve the strength in muscles with disuse weakness.

Pacing and Bracing

To manage new weakness, generally it is important to stop overusing weak muscles by pacing activities and using assistive devices and/or braces. Research demonstrates that non-fatiguing exercise programs can improve the strength of mild to moderately weak muscles. However, new muscle weakness in polio survivors is frequently not due to disuse weakness. The important point in managing new weakness is to avoid frequent or continuous muscle overuse, or muscle exhaustion, and to use a non-fatiguing exercise program.

New Muscle Weakness

Possible Adaptation
Getting on/off toilet/couch (leg weakness) Elevate toilet; Use arm rests with push off
Long distance walking Manual or power wheelchair or scooter
Foot drop or slap when walking (weakness in ankle muscles) Ankle foot orthosis (AFO brace)
Choking, swallowing problems Soft food diet, smaller bite size, refer to swallowing study

More ...

Weakness (PHI's Handbook on the Late Effects of Poliomyelitis for Physicians and Survivors)

How to manage weakness (The Post-Polio Task Force, 1997)

Prescription for Weakness (PHI's Fifth International Conference, 1989)

C. Fatigue

Fatigue is one of the most common symptoms expressed by polio survivors with a variety of possible causes. Fatigue is a nonspecific term that polio survivors often use to describe decreased muscle stamina and endurance. Survivors also describe a global or generalized exhaustion that can affect mental alertness. Many polio survivors describe a major decrease in stamina following illness, surgery or trauma, and recovery may take three to four times longer than for people without prior polio.

To treat fatigue adequately, first identify the contributing factors. For example, many medical conditions may result in fatigue. Some of the more common medical disorders associated with fatigue include anemia, diabetes, thyroid disease, fibromyalgia and depression. Dealing with disability and lost function is emotionally draining for many and can lead to depression with decreased attention, decreased ability to concentrate and increase in fatigue.

Fatigue occurring upon awakening usually reflects sleep disturbances that can be the result of a variety of conditions including musculoskeletal pain, restless leg syndrome, or respiratory abnormalities, such as sleep apneas and difficulty breathing due to spinal curvatures. Survivors may have new respiratory muscle weakness, which results in inadequte breathing and ultimately excessive fatigue.

Prescription medications such as beta-blockers and sedatives contribute to feelings of fatigue. Narcotics used for treatment of chronic pain may also disturb sleep and can contribute to a feeling of fatigue and irritability.

Chronic musculoskeletal pain can also lead to deconditioning, another contributing factor to general fatigue. While staying "in shape" or "in condition" is important, each survivor must find the balance between overworking polio muscles and appropriate conditioning exercise. A safe approach is for survivors to start a realistic supervised exercise program and slowly add additional exercises and repetitions to it.

The management of fatigue follows many of the same principles as interventions for weakness and pain. Thus, improving one symptom will often result in an improvement in others.

It is important first to identify what is contributing to the fatigue. Many health care providers use a fatigue scale to establish a baseline score or a survivor's current type and level of fatigue. They use the scale again to measure how beneficial their suggesions, such as braces, canes and breathing machines, are. With time and persistence, most people DO feel better.

You should encourage your parent or friend to make meaningful changes in their daily activities to help reduce fatigue.

More ...

Fatigue (PHI's Handbook on the Late Effects of Poliomyelitis for Physicians and Survivors)

How to manage fatigue (The Post-Polio Task Force, 1997)

When Do You Need a Power Chair? (Post-Polio Health, 2010)

D. Breathing and Swallowing Problems

Many of the urgent requests PHI receives are from family members who call because their loved one suddenly ends up in the hospital on a ventilator. The key is to be prepared.

It is critically important for the families to be on the lookout for sleep and breathing problems in their parent or loved one, especially those who were in an iron lung or who "just missed being in one." Symptoms to watch for include:

  • sleeping best while sitting in a chair or a recliner,
  • becoming breathless while doing a little extra walking, work, etc.,
  • noticing that a significant curve of the spine is getting worse,
  • observing extreme grogginess, confusion and/or headaches in the morning that "goes away" after an half-hour or so,
  • falling asleep during the day during unusual times., e.g., at a stop light, during a conversation, and
  • having repeated bouts of bronchitis or pneumonia that can be related to a weak cough or to food entering the lungs (aspiration pneumonia)

As your loved one ages, respiratory muscle (e.g., diaphragm and those connected to the ribs) strength may decrease. It is particularly evident when lying down, because in this position, the diaphragm has to work harder both to pull air in and to push the intestines and other abdominal organs out of the way. These are generally out of the way when one is upright due to gravity.

Polio survivors with weak abdominal and chest muscles can't cough as effectively and may experience more episodes of bronchitis or pneumonia. Sometimes health professionals treat the pneumonias and bronchitis as they should, but may not determine and address the cause – respiratory muscle and coughing muscle weakness. Remember that with polio, there is generally nothing wrong with the lungs themselves, but with the muscles that enable the lungs to function properly.

Testing in these situations should include pulmonary function tests, which are mostly noninvasive. They measure the forced vital capacity (FVC) and consequently the strength of respiratory muscles by measuring the maximum amount of air one can exhale. Note: Typically, a person is administered this test while sitting in the upright position, but request that it also be administered when your loved one is lying down for reasons explained above. When looking for professional medical help, look for a pulmonologist who specilizes in neuromuscular diseases, i.e., ALS, MD, etc., versus one who only treats diseases of the lungs.

Unfortunately, many articles written about sleep and breathing problems in polio survivors only mention obstructive sleep apnea (OSA). In obstructive sleep apnea, the upper airway collapses and blocks the flow of air so the person stops breathing periodically. Signs of OSA are snoring and daytime sleepiness. A sleep study can detect apneas and hypopneas (breathing lapses). Four percent of women and 9% of men nationwide experience obstructive sleep apnea, and at least that many polio survivors do. (Many sleep specialists think these estimates may be too low.)

Survivors also can have central sleep apnea (CSA), a condition in which the brain temporarily "forgets" to signal breathing muscles to take a breath. This is evident during a sleep study when there is no chest movement for at least 10 seconds, indicating that the individual is not breathing. Some people have mixed sleep apnea, which is a combination of OSA and CSA.

The solution for those with only obstructive sleep apnea is a CPAP machine – a machine that continuously blows in air through a mask worn at night or during sleep. This constant airflow keeps the airway open, so one can breathe easily.

Polio survivors who have central or mixed sleep apnea or significant respiratory muscle weakness use a bi-level device (one that blows air in at a certain pressure when inhaling and at a lower pressure when exhaling through a mask over the mouth or nose). Others use a volume ventilator or one of the newer multi-mode devices. There is a wide variety of masks and breathing devices available on the market. Experienced pulmonologists and respiratory therapists can assist in obtaining the correct treatment and equipment.

Although your parent or loved one may not have breathing or sleep problems when initially checked, periodic testing is important because such problems may develop over time.

They may begin to complain of difficulty swallowing. Complaints include food sticking in the throat, difficulty swallowing pills, coughing spells during eating, food backing up from the throat, taking longer eating a meal and unintentional weight loss.

Because many of the muscles and nerves that controls swallowing also control speech and voice, changes that make swallowing more difficult may also make speech more difficult, and quieter and harder to hear by others.

Swallowing problems that put a person at risk for aspiration – where food enters the airway instead of the stomach – can result in bronchitis and pneumonia. The two primary tests for checking swallowing are the modified barium swallow and a fiberoptic swallowing examination of the throat. Your parent's primary physician or pulmonologist can refer them to a speech-language pathologist (someone who specializes in swallowing problems, referred to as dysphagia) at a hospital or a rehabilitation center for evaluation and treatment.

More ...

My Journey through the Basics of Post-Polio Breathing Problems (Post-Polio Health, 2007)

Post-Polio Breathing and Sleep Problems Revisited (Post-Polio Health, 2004)

Cardiovascular Issues of Polio Survivors (Post-Polio Health, 2001)

Breathing Problems of Polio Survivors (Post-Polio Health, 2001)

Hypoventilation? Obstructive Sleep Apnea? Different Tests, Different Treatment
(Ventilator-Assisted Living, 2005 )

What Is Hypoventilation? (Ventialtor-Assisted Living, 2003)

Airway Clearance Therapy for Neuromuscular Patients wi th Respiratory Compromise
(Ventilator-Assisted Living, 2002)

Swallowing Difficulty and The Late Effects of Polio (Post-Polio Health, 2010)

E. Depression and Anxiety

Are you worried that your family member may be depressed or anxious? Everyone feels "blue" or "worried" or "scared" sometimes. Everyone says, "I'm depressed" or "I'm anxious" at times. This may be just a passing feeling. It may be because of something that is happening at the moment.

For example, it is normal to feel sad when someone you love dies or when you lose something that matters to you. Elders often have lost many of the important people in their lives, and may be grieving these losses. They may be grieving because they can no longer do things they love.

Normal sadness or grief is not the same as depression, even though the person having it may say, "I'm depressed." In addition, normal fears are not the same as anxiety disorders like panic, phobias, generalized anxiety and post-traumatic stress disorder.

If your parent or spouse is sad or worried and friends and family aren't able to help, they could get help from talking to someone such as a psychotherapist, physician or clergy.

Medication would not be appropriate or helpful and might even be harmful.

However, depression is different from sadness or grief. It is a serious condition and needs to be treated. With proper help, including psychotherapy and possibly medication, your family member can recover. Obtain a consultation with a qualified behavioral health professional if he or she has four or more of the following symptoms for more than two weeks:

  • Persistent sad, "empty" or anxious mood.
  • Loss of interest or pleasure in ordinary activities, including sex.
  • Decreased energy, fatigue (different from PPS fatigue), being "slowed down."
  • Sleep disturbances (insomnia, early-morning waking, or oversleeping).
  • Eating disturbances (loss of appetite and weight or weight gain).
  • Difficulty concentrating, remembering, making decisions
    (in elders, this can look like dementia).
  • Feelings of hopelessness, pessimism.
  • Feelings of guilt, worthlessness, helplessness.
  • Thoughts of death or suicide, suicide attempts.
  • Irritability.
  • Excessive crying.
  • Chronic aches and pains (not attributable to PPS or related conditions)
    that do not respond to treatment.

Just as it is normal to feel sad when sad things happen, it is also normal to feel anxiety or fear over things we can't control, when changes happen to us or to others around us, or when frightening things happen. Someone whose health or physical abilities are changing may express fear about the future. (Some people have always been worriers and will always find things to worry about no matter how good life seems to be.)

Anxiety disorders are different from these fears. Signs that your family member may be suffering with an anxiety disorder are not limited to but include:

  • Excessive worrying.
  • Fears that seem excessive or unreasonable.
  • Panic attacks.
  • Fear of leaving the house (other than because of accessibility or mobility concerns).
  • Compulsions (hand-washing, hoarding, counting, checking).
  • Flashbacks, nightmares or intrusive thoughts of traumatic experiences.

There are effective treatments for anxiety disorders that include psychotherapy and medications. Consult a behavioral health provider or your parent's physician for more information.

More ...

Recognizing Depression (Post-Polio Health, 1999)

Treatment Approach Options (Post-Polio Health, 1999)

Pursuing Therapeutic Resources to Improve Your Health (Post-Polio Health, 2002)

F. Trauma

Injuries from accidents, particularly falls, are common among aging polio survivors who may be slowly weakening. Even though polio survivors were taught "how to fall" during rehabilitation from the acute polio and may have fallen frequently most of their lives, do not dismiss or minimize the danger of falls.

Serious injuries, such as fractures and joint dislocations, and lesser injuries, such as sprains, strains and bruises, may all require a long period of not using a limb to allow for healing.

Both injuries to bones, joints and muscles and severe illnesses, including major surgeries, can result in long periods of being in bed and/or being much less active than usual. Inactivity for even several days may result in enough new muscle weakness and/or loss of energy to make your loved one unable to move about in their usual ways and can threaten independence.

The medical name for this type of muscle weakening is "disuse atrophy," and the name for the loss of energy is "deconditioning" or "getting out of shape." Both of these conditions begin more quickly, worsen more and are harder to reverse for polio survivors than for people without nerve or muscle problems.

Clinicians have observed that the recuperation period after surgery, severe illness or injury is at least three to four times longer. Survivors are at risk of additional strain injuries during post-injury periods because they are doing things differently, i.e., have to put most of their weight on one leg after knee surgery. Post-injury rehabilitation efforts may also cause strain on muscles and joints. During severe injury and illness, survivors may experience new breathing difficulties from respiratory muscle weakness that was not evident before.

It is not surprising that about one-third of polio survivors report the onset of "profound fatigue" and/or "post-polio decline" during a period following illness, surgery or trauma. Minimizing the time of inactivity and planning for a longer and more carefully supervised period of rehabilitation and/or recuperation after traumatic injury can be very helpful. Paying attention to inactivity and over-strenuous rehabilitation activity is often crucial for post-polio survivors to make a full recovery to the pre-injury/illness level of function.

More ...

From the Inside Out (Post-Polio Health, 2004)

Trauma (PHI's Handbook on the Late Effects of Poliomyelitis for Physicians and Survivors)

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