“Once Stricken, Twice Afflicted”
AS TOLD BY JACK MEINTSMA
As a result of effective vaccines and diligent immunization programs, science has made great progress in its effort to eradicate polio, a debilitating childhood disease. However, even decades after recovering from polio, some survivors find themselves afflicted again, facing what is called post-polio syndrome (PPS).
YOU may never have heard of PPS. Neither had I until it became very much a part of my life. But in order to understand the syndrome’s effects on me, let me go back to a day in 1941, when I was about a year old.
My mother noticed that I was slumped over in my high chair. She rushed me to the doctor. After examining me, the doctor told my mother, “Your son has infantile paralysis.” * I was soon paralyzed from the waist down.
After six months on a waiting list, I was admitted to the hospital. Years of recurring illness followed. Through intense physical therapy, I gradually regained the use of my legs. At the age of 14, I was walking again. But other problems, such as incontinence, remained. Over the years, I went through several cycles of surgery, confinement to a wheelchair, and physical rehabilitation. Still, my left foot is three shoe sizes smaller than my right foot, and my left leg is an inch shorter than my right leg. It was not until I was in my early 20’s that I got the embarrassing problem of incontinence under control. Finally, I was completely over polio—or so I thought!
Then, at age 45, I began to experience pain in my legs, followed by fatigue. Also, my leg muscles moved involuntarily at night, making it very difficult for me to sleep. The symptoms did not let up; they only worsened. You can imagine my surprise when I was diagnosed with PPS—44 years after my mother recognized my initial illness.
What Is Polio?
Polio is a highly infectious disease caused by a virus that enters the body through the mouth and multiplies in the intestines. After invading the nervous system, the virus can quickly cause total paralysis. As the virus passes along to the brain and then to the spinal cord, initial symptoms are fever, fatigue, headache, vomiting, stiffness in the neck, and pain in the limbs. Many of the nerves stop functioning, resulting in paralysis of some of the muscles in the arms, legs, and chest.
But the body’s recuperative powers are amazing. Nerves that were not affected by the virus send out new “sprouts,” as if running extra telephone lines, to reconnect the muscle cells that were orphaned when their previous nerves died. A single motor neuron in the spinal cord may also grow terminal axon sprouts, which may connect to many more muscle cells than it did originally, thus greatly increasing the neuron’s capacity. A motor neuron that previously stimulated 1,000 muscle cells might eventually reconnect to between 5,000 and 10,000 cells. This is evidently what happened in my case, so that I am able to walk again.
However, it is presently thought that over a period of 15 to 40 years, these neural-muscle units may begin to show signs of fatigue because of being overworked. PPS is a condition that causes symptoms to reappear in individuals who had recovered from polio decades earlier. Many victims experience muscle weakness, fatigue, joint and muscle pain, cold intolerance, and breathing problems. Though accurate figures are hard to obtain, the World Health Organization estimates that there are 20 million polio survivors worldwide. Current evidence indicates that 25 to 50 percent of them are affected by PPS.
What Can Be Done to Help?
Researchers suggest that the old, overworked motor neuron becomes so exhausted that some of its nerve endings die, leaving many muscle fibers orphaned once again. To slow this process, a polio survivor needs to reduce the demand on the affected muscles. Some therapists recommend assistive devices, such as canes, braces, crutches, wheelchairs, and scooters. In my case, it became necessary for me to wear braces on both of my legs and feet. I also have specially made shoes that support my ankles and help to keep me from falling.
Moderate exercise and muscle stretching may also be required, depending on one’s condition. Swimming or warm-water pool therapies are excellent means of improving cardiovascular function without straining the muscles. It is important for the patient to cooperate with the doctor or the therapist in any exercise program.
In polio survivors, repeated demands on the neurons ultimately result in the failure of some muscle fibers to work properly. Survivors may thus experience a decrease in stamina or even suffer debilitating fatigue. Loss of stamina may also result from the stress of constant pain or of dealing with a returning disability. I have found that periods of rest during the day help me recover from fatigue. Many doctors caution their patients to pace their day-to-day activities rather than push themselves to the point of exhaustion.
In my case, constant joint and muscle pain has been one of the hardest things to deal with. Some may experience muscle pain particularly in those muscles that they have strained during their usual daily activities. Others experience a flulike aching in all their muscles, along with exhaustion.
Pain may lessen with anti-inflammatory or other types of medication. But despite medications, many polio survivors suffer from disabling chronic pain. Physical therapy along with heat and stretching may help. A sufferer who gave up her practice as an anesthesiologist told me, “I could get out of this wheelchair and struggle across the room, but the pain is so great, it isn’t worth it.” Now, even with medication that helps, I must frequently resort to my wheelchair.
Some polio survivors have lost the ability to shunt blood away from the skin, which the body normally does to conserve heat in the muscle tissues. Without this ability, an affected limb will radiate more heat and cool down. When the muscles are cold, poor communication from the motor neuron to the muscles results, and muscles do not work properly. Thus, it is important to keep the affected muscles warm by wearing extra clothing. Some use an electric blanket or a hot-water bottle during cold nights. Avoiding exposure to cold weather helps. I found it necessary to move to a warmer climate.
Breathing problems are common, especially among those with a history of bulbar polio, a form of polio that affects the spinal cord in the upper neck and thereby weakens the breathing muscles. In times past, this type of polio landed many people in an iron lung. Today, a ventilator may be used to assist weakened lung muscles. In my case, it is very hard for me to breathe when I exert myself. Therefore, every day I use a small device to exercise my lung muscles.
Survivors need to be aware of another potential difficulty. It is not advisable for them to have surgery and then return home the same day. Dr. Richard L. Bruno, of the Kessler Institute for Rehabilitation, states: “NO POLIO SURVIVOR SHOULD HAVE SAME-DAY SURGERY FOR ANY REASON except for the most simple procedures that require only a local anesthetic.” He adds that polio survivors require twice as long to recover from the effects of any anesthetic and may need additional pain medication. Their stay in the hospital will usually be longer than that of other patients. If I had known that, I might have been spared a bout of pneumonia following a recent minor surgery. It is wise to discuss these concerns with the surgeon and the anesthesiologist before surgery.
My Life Today
When I was able to walk at the age of 14, I thought my problems were, for the most part, behind me. However, after many years I find myself experiencing the same problems all over again. For polio survivors like me who develop PPS, the situation is, as one writer put it, “once stricken, twice afflicted.” Of course, it is only normal to get discouraged at times. Nevertheless, I can still get around and take care of myself. I have found that the best medicine for me is to have a positive attitude, to adjust to changing circumstances as they develop, and to appreciate what I can still do.
For example, when I started in the full-time Christian ministry about ten years ago, it was easier for me to get around than it is now. I was able to walk for a considerable distance before tiring or experiencing much pain. Now, however, I can only walk a very short distance. To conserve energy, I try to avoid climbing stairs and walking up hills. I use my wheelchair whenever possible. By adapting my ministry in various ways, I find it very enjoyable and even therapeutic.
Yes, PPS does affect my life. It is possible that my health will worsen. But I find great comfort in the Bible’s promise of a new world in which all will be young again, with full health and mightiness. Over the years, I have often thought about the inspiring words of Isaiah 41:10: “Do not be afraid, for I am with you. Do not gaze about, for I am your God. I will fortify you. I will really help you.” With God’s help, I am determined to keep going until PPS is a thing of the past.
^ par. 5 Also called poliomyelitis, or polio.
[Box on page 20]
‘Might I Have Post-Polio Syndrome?’
Most experts require some combination of the following criteria to make a diagnosis of post-polio syndrome:
▪ A confirmed diagnosis of paralytic poliomyelitis in the past
▪ A period of partial or complete functional recovery followed by an interval (at least 15 years) of stable neurological function
▪ Gradual or sudden onset of muscle weakness, fatigability, muscle atrophy, or muscle and joint pain
▪ Possible problems breathing or swallowing
▪ Persistent symptoms for at least a year
▪ Exclusion of other neurological, medical, and orthopedic problems
Not all polio survivors develop PPS, though as they age, they may naturally develop premature tiring and aging of overextended neural-muscle units. Furthermore, over half of polio survivors who go to their doctor with new symptoms do not have PPS. Notes one expert: “Sixty percent of polio survivors with new symptoms have a medical or neurological problem that is unrelated to polio, and that problem may be treatable. Half the remaining patients have increasing orthopedic issues related to their polio residua.”
[Box on page 21]
Is There a Cure?
Just as there is no confirmed etiology, or cause—and thus no definitive laboratory test—there is really no cure at the present time for post-polio syndrome (PPS). There is, however, treatment revolving around a three-pronged rehabilitation approach. Says one expert: “More than 80% of patients with PPS will demonstrate benefit with rehabilitation techniques.”
The three approaches are:
1. Life-style modifications
▪ energy conservation
▪ assistive devices
▪ nonfatiguing exercise
▪ staying warm
2. Medications and supplements
Though many medications, prescription as well as natural supplements, have been tried, none has been proved to help. There are many anecdotal reports of improvement, but further study is needed. Keep in mind that herbs can interact with prescription medicine, so always let your physician know what you are thinking of taking.
3. Quality of life
“The strongest medicine that a practitioner can provide to a patient with PPS is education and encouragement. . . . Patients who were better able to make lifestyle modifications (those with better problem-solving skills, more accessible environments, more access to information and support, and a readiness to compensate with assistive devices) adapted better in their daily occupations.”—Dr. Susan Perlman.
[Box on page 22]
What About Exercise?
Early on, recovering polio survivors were encouraged to exercise “until it hurts.” Then in the 1980’s, they were warned about the dangers of exercise, essentially about “using up” their viable muscle tissue.
Today experts recommend a path midway between those two extremes. Their message now is, ‘Don’t overdo it, but beware of inactivity.’ The National Center on Physical Activity and Disability says: “New knowledge tells us that no matter what our level of disability is, we should be encouraged to value exercise, enterprising enough to come up with a highly customized plan and enduring enough to reap the rewards.”
In summary, an individualized exercise plan should
▪ Be developed in conjunction with a knowledgeable physician or physical therapist
▪ Start at a slow or moderate pace and progress gradually
▪ Include warming up before and cooling down after
▪ Focus on stretching and general aerobic exercises
▪ Include warm-water pool exercise, if available
Says one expert in The Johns Hopkins Medical Letter: “Tiredness and pain persisting beyond an hour indicate that muscles have been overused.” So listen to your body and avoid pain, fatigue, and weakness.
[Box on page 23]
What Are the Risk Factors?
Though every case is different, the following factors may increase the risk of a polio survivor developing post-polio syndrome:
▪ Severity of initial polio infection. Generally speaking, the more severe the initial polio, the higher the risk of PPS
▪ Age at initial onset. Those who got polio at a younger age are actually less likely to face PPS
▪ Recovery. Surprisingly, the greater and more complete the initial recovery, the greater the chance of eventually developing PPS
▪ Physical activity. If a polio survivor has been in the habit of exercising to exhaustion over the years, this may increase the risk of PPS
[Picture on page 19]
A nurse helping me to recover after surgery when I was 11 years of age
[Picture on page 23]
Today, in the full-time Christian ministry with my wife