Inspiration, news and knowledge from Polio Experience Network
No. 5 - March/April, 1995
In This Issue:
"The Cause and Treatment of Post-Polio Fatigue," by Richard L. Bruno, Ph.D.,
Nancy M. Frick, Lh.D., et. all
"Super-Natural Strength" by Dave Graham
"Making Changes," by Sharman Collins
Boosting the Immune System
True anecdote
Copyright Information
Fatigue is the most commonly reported, most debilitating and least studied Post-Polio Sequelae (PPS) affecting the nearly 2 million North American polio survivors. Among polio survivors, 91% reported new or increased fatigue, 41% reported fatigue significantly interfering with performing or completing work and 25% reported fatigue interfering with self-care activities. Fatigue was reported to be triggered or increased by physical overexertion in 92% and by emotional stress in 61%. Importantly, polio survivors distinguish between the physical tiredness and decreased endurance they associate with new muscle weakness, and a brain fatigue that is characterized by problems with attention and thinking. Between 70% and 96% of polio survivors reporting fatigue complained of problems with concentration, memory, attention, word-finding, maintaining wakefulness and thinking clearly, with 77% reporting moderate to severe difficulty with these functions.
Problems with attention, memory and thinking suggest that the symptoms of post-polio fatigue cannot be explained merely by the poliovirus damaging anterior horn motor neurons. Autopsies performed fifty years ago on people who died after having had polio, whether they had paralysis or not, showed that the poliovirus almost always damaged specific areas in the brain. These damaged areas include the brain's activating system that keeps you awake and allows you to focus your attention. The poliovirus also damaged neurons that produce neurotransmitters, including the enkephalins and endorphins (called the "body's own morphine") as well as dopamine and ACTH which activate the brain.
With poliovirus damaging the brain's activating system, you would expect that the original polio infection should cause brain activating problems. And, reports written during the polio epidemics did describe "drowsiness," lethargy, prolonged sleeping and even coma during the acute polio infection. One-third of patients with acute spinal, spinal and bulbar and even non-paralytic polio showed "disorientation, apathy, pronounced sleep disorder (and) irritability." These mental changes were associated with the abnormal slowing of brain wave activity on the electroencephalogram (EEG). Further, a high percentage of children clinically recovered from poliomyelitis insofar as motor disability is concerned, had qualitative difficulties in mental functioning such as "fatiguability and fleeting attention" for months after the acute polio.
These reports of persistent drowsiness, fatigue and fleeting attention following the acute poliovirus infection are similar to polio survivors' recent complaints of late-onset fatigue and impaired attention. And, both acute and late-onset post-polio fatigue are reminiscent of nearly two dozen outbreaks during this century of post-viral fatigue syndromes (PFS) that are related clinically, historically or anatomically to poliovirus infections. These relationships and recent studies comparing post-polio fatigue and chronic fatigue syndrome (is described in the complete article) in an attempt to understand the cause and treatment of post-polio fatigue.
Taken together, the complete findings suggest a model for the cause of post-polio fatigue:
Topics discussed in the complete article, available at Polio Outreach Support Group meetings:
After a year-long struggle with increasing pain, fatigue and weakness, I succumbed to my need for a scooter.
Walking down the hill to get the mail and then up again had become impossible. Christmas shopping was a nightmare and caused me too lose more strength. My husband and I went on vacation in the spring of 1992. Of course, I refused t ride in a wheelchair in the airport. And when we arrived, I was dismayed to find out that our hotel was so large that the walk from our room to the pool left me completely exhausted and in pain. When wee returned home, my legs were weaker and I could no longer go to the grocery store.
Desperately wanting to get out of the house, I ordered a scooter. What a feeling of freedom! Once again, I could feel the wind in my face. It wasn't the same thrill as riding my bicycle down a steep hill, but at least I was outside. And a friend and I spent many hours riding down logging trails and getting stuck on logs and in ruts. What fun! I once again felt connected to the human race. The laughter and freedom were back.
However, dealing with being visibly disabled overwhelmed me then and still does at times. Somehow, sitting on a scooter or wheelchair makes you invisible. Acquaintances avoid making eye contact. Sales persons rarely volunteer their help. Even close friends do not understand how I can look so normal and yet be so weak. I have lost some friends. They are just not able to talk about what has happened to me. Somehow, I have become to them not a person who has problems but a person who is a problem.
I have learned different coping techniques. Making extra effort to make eye contact and to smile at people lets them know it is OK for them to talk to me. This works some of the time -- but most people are extremely uncomfortable around people with disabilities. Redefining my own self worth based not on what I can do but on who I am is essential. I need to see myself as a worthwhile person. I no longer have the beauty queen-jock-supermom image, but I do have a valuable contribution to make. My worth is based on my knowledge of the value the Lord places on me. I am one of His children and He promises to help me. "For I am the Lord, your God, who takes hold of your right hand and says to you, do not fear; I will help you " (Ps 41:13) I pray before I back my scooter out of my van that He will help me to smile and be extra-friendly. And He does help me. I also pray that He will send some special person along side of me who will feel comfortable talking to me. And that happens quite frequently.
My Coug Mom sticker on the back of my scooter is a conversation starter. And my Polio Outreach sticker lets people know that I am dealing with something related to polio. Hopefully, they will ask questions. If I am in an especially nerve-wracking situation -- I will use humor. Sometimes I see myself hopping on my Harley and riding away at a high speed. Or maybe jumping on a mighty steed and galloping away. My scooter looks great in my mind with a hundred helium balloons tied on -- and there I go, floating gently upward.
My scooter has opened doors for me that would otherwise be tightly closed. It helps me make the best out of one of life's most difficult circumstances.
If you take daily multivitamins, you just may be doing more to better your health than you realize. A recent study suggests that taking multivitamins can possibly improve your immune system's ability to fight off infection. In the study, two groups of healthy adults ages 59 to 85 took either an over-the-counter multivitamin or a placebo while maintaining their regular diets.
Researchers measured the participants' blood concentrations of various nutrients and tested their immune responses. Among the group taking multivitamins, there was a 64 percent increase in immune responses in addition to higher blood concentrations of several vitamins after one year. The placebo group showed no significant changes in immunity.
According to the study's principal investigator, Dr. John Bogden of the University of Medicine and Dentistry of New Jersey, micronutrients such as zinc and vitamins A and E are vital to the proper functioning of the immune system. "In the study, the increased vitamin levels were not a correction of deficiencies," Dr. Bogden says, "but it is possible that older adults require more of the vitamins to maintain optimum immune system function." Dr. Bogden plans to investigate further the benefits of multivitamins for the immune system, how soon effects appear and the differences in the responses of men and women.
Author and business leader Fred Smith writes:
One of my treasured memories comes from a doughnut shop in Grand Saline, Texas. There was a young farm couple sitting at the table next to mine. He was wearing overalls and she a gingham dress. After finishing their doughnuts, he got up to pay the bill, and I noticed that she didn't get up to follow him.
But then he came back and stood in front of her. She put her arms around his neck, and he lifted her gently out of the chair and backed out the front door to the pickup truck, with her hanging from his neck.
As he carefully put her into the truck, everyone in the shop watched. No one said anything until a waitress remarked, almost reverently, "He took his vows seriously."