When I was three years old, my mother became a victim of
Schizophrenia. She never recovered. When I was eleven years old, I had
paralytic polio. I partially recovered. These two life events were
major factors in guiding my life toward a career as a physician and a
psychiatrist. For at least the last decade, I have struggled with
Post-Polio Syndrome (PPS). Most of you are quite familiar with all of
the manifestations of that struggle. For almost six years, I have had
the privilege of being the president of the Central Virginia Post-Polio
Support Group, a marvelous group. As a result, I have had the pleasure
and challenge to communicate with hundreds of PPSers around the world.
I think I have learned a lot about PPS and the people who are living
with this life changing disorder. In this article, I will attempt to
share what I am calling Helpful Hints for Living with Post-Polio
Syndrome. Many of these hints are similar to what is now called "mind -
body" medicine. Many of them are replicated in other lists and
articles. I offer these hints for your review, reflection, and
response. This list represents only my opinion and is not to be
interpreted as anything more than that.
Adequate, restful sleep is a major asset in living with PPS.
Successfully living with PPS usually requires more sleep than before
the onset of PPS. The amount of sleep may range from 8 to 12 hours.
This may be all nighttime sleep or could be a combination of nighttime
sleep plus an afternoon nap. Many symptoms of PPS can interrupt the
attainment of this level of sleep. Problems with pain, hypoventilation
due to weakened respiratory muscles, sleep apnea, anxiety, panic
attacks, and depression are common sleep disturbers. Any of these
disturbers need to be evaluated and treated before sleep hygiene can be
- Pain: Pain and PPS are like
partners of misery. Every effort should be made to eliminate or reduce
pain without resorting to narcotic analgesics. A variety of pain
management approaches may be tried. This might include over the counter
preparations such as Tylenol, Ibuprofen, aspirin, and other
non-steroidal anti-inflammatory medications. Non habit forming
prescription medications may help pain and sleep problems. Low doses of
the tricyclic antidepressants and/or the selective serotonin reuptake
inhibitors may help to reduce the daily pain level and improve sleep.
If one has made a genuine effort at managing pain by reduced activity,
more rest, and the use of assistive devices, then the use of narcotic
analgesics would be more appropriate. Other pain management approaches
might include moist heat as obtained in a heated pool, gentle massage,
magnet applications, and even acupuncture. Heated pools should not
exceed 92 degrees F. Massage should not be aggressive, and a trained
professional should administer acupuncture.
- Fatigue: Fatigue is probably
the single most commonly shared symptom of PPS. Fatigue contributes to
greater pain and sleep disturbance. I believe that intermittent down
time is the most effective method of managing fatigue. Down time means
lying down prone or supine. Each person has to discover what is the
best balance between down time and up time for each day. For example,
spending an hour reclined every four hours works well for many PPSers.
Medications to reduce fatigue have proven to be of minimal
effectiveness in double blind studies. Also many PPSers do not tolerate
medications well and have numerous side effects.
- Respect new weakness. If new
weakness is detected or experienced, respect this reality and do not
try to restore strength by an exercise program. Exercising with this
goal in mind will likely lead to more pain and a progression of the
weakness. Most of us get enough exercise just trying to maintain the
activities of daily living and trying to remain independent. Be sure
that any physician or physical therapist who recommends exercise is
fully knowledgeable about PPS.
- Blood pressure: Maintaining
normal blood pressure is most important for PPSers. Many of us
experience elevated systolic blood pressure (the upper number on a
blood pressure reading) after exerting some physical effort. Our heart
rates may also increase during times of fatigue and minimal physical
effort. If this elevation of blood pressure persists, the risk for
heart attack, heart failure, and stroke increase. There are many
effective medications to control blood pressure. However, beta-blockers
sometimes cause side effects for PPSers. The systolic pressure should
be below 140 at rest and our pulse rate should be below 100 at rest.
- Brain power: Utilize your
brain or intellect to compensate for the increased physical limitations
of PPS. This is a process that most polio survivors have been doing for
years. PPS calls for an enhancement of this same process. Read more.
Read some of the classics. Audio books are a wonderful way to read
without tiring your brain or eyes. If your physical disability makes it
difficult to hold a book or maintain a reading posture, you are
eligible for the Federally funded audio (talking) books for the blind
and handicapped. A simple application has to be completed by your
doctor to authorize this service. I would also recommend the many
benefits of owning a computer. For PPSers, the investment required to
purchase a computer is usually a rewarding undertaking. You are never
too old to enjoy and learn from a computer, which literally makes the
world available to you.
- Doctors and therapists: Find
doctors and other therapists who not only know about PPS, but are
interested in learning more and will listen to you. However, be
cautious if a doctor tends to blame all your symptoms on PPS because we
are in an age group, which is vulnerable, to many other
medical/surgical problems. Your doctor should rule out other causes of
symptoms that simulate PPS symptoms. Your doctor should not hesitate to
refer you to an appropriate specialist if any symptoms are not
- Herbal medicine: Americans now
live an average of about thirty years longer than our ancestors of one
hundred years ago. This is largely due to antibiotics, better
diagnostic and treatment techniques, improved nutrition and more
prevention via vaccines. Because we have it so good, we want it even
better. Thus, the herbal, vitamin, and nutrient alternative medicine
business is booming. Keep in mind that the Federal Drug Administration
does not have the resources to monitor these alternative products as it
does prescription medications. Whether it be St. John's Wort, Ginkgo
Biloba, L-carnitine, Feverfew, the various vitamins, or shark liver
oil, be sure that your physician knows what you are taking and remember
that with many of these products, cheaper does not always mean purity
of the product. If an alternative medicine seems to be helping you,
continue it. Nobody has found a consistently effective pharmaceutical
treatment for PPS.
- Talk to someone: Talk to
someone who cares about your feelings in living with PPS. This person
might be your spouse, a family member, friend, or even a professional
therapist. Our support group is a healthy and welcome forum for talking
about your feelings. Many polio survivors have spent a lifetime of
containing their feelings of loss and even anger. To express these
feelings to someone is very difficult, but the benefit is immense.
- Spiritual base: Having a faith
or spiritual base that transcends the daily activities and struggles of
this life can be an additional source of personal and inward strength.
This pilgrimage is a personal choice, but I believe provides a greater
meaning to our time in the midst of the ages.
- Nutrition: Enjoying good food
is still one of the pleasures of life that most of us still can do.
That is the up side. The down side is that we more easily gain weight,
as we are more sedentary living with PPS. The practical advice is to
avoid big meals, especially at the end of the day. Eat balanced meals
with some emphasis on protein content. Maintain good hydration. Good
hydration assists renal and pulmonary function.
- Keep your feet up: When
sitting, keep your feet elevated whenever possible. Another advantage
of taking intermittent down time throughout the day is the benefit of
preventing or at least reducing dependent edema. Weakened leg muscles,
along with reduced motor activity, contributes to dependent edema.
Chronic dependent edema can lead to possible leg ulcers, deep vein
clots, and phlebitis. Complications of these conditions can result in
life threatening pulmonary emboli. Wearing support hose can also help
prevent dependent edema.
- Don't ignore headaches:
Headaches are a common sign of PPS fatigue. Have your doctor rule out
other causes of headache such as hypertension, tension vascular
headache, or some other medical problem. A dull daily headache is often
a sign of PPS fatigue and particularly brain fatigue. Brain fatigue is
often marked by word finding difficulties, mental focusing, and
concentration problems. These brain fatigue symptoms are usually
reversible with rest. Rest and more rest is the best treatment for the
dull headache of fatigue.
- Pace: Approach pacing like you
would an algebraic equation. The daily physiological energy expended
must equal the physiological energy stored and not exceed it. Most of
us are accustomed to expending more energy than we store or acquire. If
you know that a particular day's activity will result in more energy
expended, plan to spend more than one day to restore and recover that
energy. Balancing this energy equation over time results in successful
pacing. Pacing reaps results, but not in a few days. One should
practice pacing for months and years.
- Breathe well: Healthy
breathing and good sleep hygiene are coupled together as I mentioned in
#1. Sometimes, the muscles
of breathing grow weaker with the progression of PPS. Thus, there could
be an insidious onset of chronic hypoventilation, which could
contribute to an overall feeling of fatigue. Also scoliosis, resulting
from polio may advance with the progression of PPS and aging. This
process could restrict the ventilatory capacity of the lungs and lead
to hypoventilation. Measurements of pulmonary function and arterial
blood gases can help to diagnose hypoventilation. Most PPSers with
these problems do not usually need added oxygen, but simply improved
ventilation, often only at night. Depending on the degree of
hypoventilation, this condition can often be treated with a C-pap,
bipap, or ventilator without the necessity of added oxygen. Actually,
adding oxygen without improving ventilation can increase the risk of
carbon dioxide retention in many PPSers with scoliosis or weakened
respiratory muscles. Untreated chronic hypoventilation can lead to
respiratory failure and ultimately death.
- Extend recovery from any stress:
Expect to take three to four times longer to recover from an infection,
minor or major surgery, an injury, accident, or emotional upheaval. For
whatever the reason, the physiological restorative processes of the
body and brain are delayed by PPS. When any of these stresses occur,
plan on taking longer to recover.
- Use your sense of humor: Many
survivors of polio seem to possess a witty sense of humor and an upbeat
approach to life. A sense of humor is a good way to remain innovative,
creative, and positive. Keep using this attribute.
- Sex and Intimacy: Sexual
stimulation is good for the cardiovascular system. Be creative with
this stimulation. The polio virus did not damage the sensory portion of
the nervous system. Feelings, both physical and emotional, are still
potentially available for expression and perception. Linda Van Aken and
I wrote an article about PPS and
Intimacy about a year ago. That article attempts to address
- Be more dependent: Not only
should you allow others to help, but also you should tell them how to
help you. If your spouse is your main helpmate, be cognizant that
he/she also gets tired. If you ask your spouse or anyone else to fetch
or fix things for you, be organized about your requests and minimize
their physical effort and time consumed. Simply keeping a list of your
needs or requests can help conserve your spouse or helper's energy and
reduce the development of interpersonal tension. It is very difficult
for PPSers to relinquish some controls, but in doing so, avoid trying
to control your spouse or helper. Communicate what you want or need,
but be courteous and grateful in the process.
- Roll more, walk less: When
walking becomes more difficult because of new weakness or fatigue, get
some wheels and roll more. If you can still walk some and rise
unassisted from a chair, a scooter might be advisable. A
battery-motorized scooter allows you greater and safer mobility.
Scooters are great for malls, touring your neighborhood, and even in
parks. If your weakness is profound, an electric wheelchair is probably
what you need. Most health insurance carriers will pay for most of the
cost of a scooter or electric wheelchair. Even Medicare covers these
devices as long as your physician orders it. Once you learn the value
of electric mobility, you may want to invest in a van and a lift to be
able to take your wheels wherever you go.
- Use assistive devices. Many of
us have found it necessary to acquire new braces, canes, and crutches
in order to keep walking and maintain balance. Accepting this need may
be a step back in time for some. Don't resist this help. By all means,
do anything to prevent falls. Do what is wise and necessary. Install
grab bars, elevate the toilet seat, use pick sticks, and install ramps.
I think it is wise to carry a cellular phone on your person (or
wheelchair or scooter) at all times. Use your brain to help yourself.
Only you know what you need and what may help.
- Never, ever give up. During
the struggle with acute polio and its aftermath, many of us were told,
"No pain, no gain." We were encouraged to overcome adversity and that
it was all up to us. With PPS, we know that attempting gain will bring
more pain and no real gain in the process. However, we still need to
retain our persevering and hopeful approach to life. Giving up will
serve no positive purpose and is a sign of depression. We should press
on, but pace the race. We should be more like the turtle than the hare.
- To be added when a new hint
comes from you.
Henry Holland, Richmond., Virginia, USA. Henry4FDR@aol.com
Originally published in the Central Va PPS
Support Group (PPSG)'s newsletter, The Deja View, in the
June/July 2000 issue.
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