Henry's Helpful Hints for Living with Post-Polio
Syndrome
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.
- Sleep: 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 improved
- 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 explained.
- 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 this issue.
- 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.
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