In This Issue:
Sharman’s News, Sharman Collins
“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
P.E.N. & ink Link
Boosting the Immune System
Hand-Outs by Mail
True anecdote
Share-A-Ride
Phone Pals
Copyright Information
SPRING IS ALMOST HERE!
I’m yearning for warmer weather. Layer upon layer of clothing makes me feel like a little kid in an overstuffed snowsuit! Soon, the flowers will be blooming and just right for sniffing. My scooter batteries are charged and I’m ready to escape the winter doldrums. Anyone want to join me for a tour of Finch Arboretum? Or, perhaps you would prefer a spin on the Centennial Trail?
…..My scooter enables me to more fully participate in “normal” activities. However, acknowledging my need for special equipment has been very difficult. Visibly joining the ranks of the disabled requires a multitude of psychological and emotional adjustments. In the support group, we help one another to cope with the changes that post-polio syndrome demands.
…..On March 28, Scott Pritchard, a well-known local dietitian, will be our speaker. He will make practical suggestions on how we can better control our weight by eating properly. Lower body weight greatly reduces the work load on weakened muscles.
…..In April, we will have a general discussion about the causes of post-polio syndrome. This would be a great meeting for you to invite friends or family members who want to know more about the problems you are facing.
…..We will again be meeting in the auditorium at the Shriners Hospital at 6:30 pm. If you would like to join us for dinner in the cafeteria, please arrive by 5:15. The meeting room will be open by 6:00 pm and the library will be available for browsing. I’m looking forward to seeing you on March 28!
Lots of love,
Sharman
[The following is condensed from a seven page article. We will have the complete article available at the next support group meeting.] [For full on-line article click on this LINK.]
Proceedings of the March of Dimes Conference on Post-Polio Sequelae (1995)
The Cause and Treatment of Post-Polio Fatigue
by Richard L. Bruno, Ph.D., Nancy M. Frick, Lh.D., Susan J. Creange, M.A., Todd Lewis, Ph.D., and Terry Molzen, M.S.
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:
- The poliovirus damaged the brain activating system;
- MRI and hormonal findings suggest that this damage is present today in polio survivors;
- Neuropsychological testing shows impaired attention in patients with post-polio fatigue;
- Therefore, poliovirus damage to the brain’s activating system may cause decreased brain activation, impair attention and generate the symptoms of post-polio fatigue.
Topics discussed in the complete article, available at Polio Outreach Support Group meetings:
- Can the poliovirus cause fatigue?
- Is fatigue “hard wired” into the brain?
- Comparisons of Post-Polio Fatigue and Chronic Fatigue Syndrome
- Clinical Implications – Acknowledgments – References
This material was posted and down-loaded on February 9, 1995 from the America On-Line disABILITIES Library. Our Internet address is DAVID508@aol.com.
Super-natural Strength
by Dave Graham
The year was 1950 — the Polio epidemic held Southeast Portland in it’s death grip. The body of the five year old boy hung limp from his mother’s arms as she struggled up the long walk to Isolation Hospital. This institution, like none other, struck horror in the minds and hearts of parents throughout the region. For it was here, in this building of quarantine, that many had lost their children.
The young mother gave him up to the attendant, laying his frailness on the adult-sized cart that would take him away, out of her sight and grasp, perhaps forever.
As the youngster, gasping for breath, was rolled away, she prayed aloud, “The Lord is my Shepherd, I shall …..”
Later, as she maintained her vigil outside the small hospital lobby, a young lady appeared. She was dressed in white and had a look of tender authority. The news was not good. The youngster’s only chance seemed to be the iron-lung. As they spoke, they were busy preparing the grotesque machine to receive his tiny frame.
The mother turned and knelt a moment, praying. When she arose, she wore a peaceful smile. In astonishment, the nurse inquired of her demeanor. With calm boldness, the mother shared a beloved scripture: “For this reason I also suffer these things, but I am not ashamed; for I know who I have believed and I am convinced that He is able to guard what I have entrusted to Him until that day.” (2 Tim. 1:12)
A few miles away, friends and relatives gathered to pray. They would implore the Creator to intercede for the boy. “For where two or three are gathered together in my name, there am I in the midst of them.” (Matt. 18:20) They knew that they would be heard.
The next morning the sun shown bright as the young mother returned to the hospital and took up her vigil in the lobby. In time, a medical man, his shoulders bent and hair mussed, appeared at the door. Obviously tired, yet a wide grin adorned his face. “It was a miracle if I ever saw one,” he proclaimed. “Your boy, he’s a good one. I never saw such a fighter. He’s got strength like –, like I’ve never seen! He’s one that old wind barrel never got.”
Today the mother is a great-grandmother, the boy, a man. After these many years, they still look to God for strength and guidance.
In those days of early technology and primitive medical treatment, we either put our faith in God or we perished in our own despair.
In the last forty years, I have seen the changes. I have watched medicine advance and technology soar. But, I have also watched men turn their faith to temporary things and momentary pleasures. From where will this contemporary man receive his super-natural strength when he really needs it?
“The LORD is my light and my salvation — whom shall I fear? The LORD is the strength of my life — of whom shall I be afraid?” (Psa 27:1)
MAKING CHANGES
By Sharman Collins
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.
P.E.N. & ink Link
Do you have a question, a need, an answer or a gadget? Phone Elinor (509) 238-4812 or write P& I Link, N. 24104 Jim Hill Rd., Chattaroy, WA 99003
I have a set of Book of Knowledge encyclopedias, 1967. Free! Also, story book and science book sets. Call Dave at (509) 255-6131.
NEEDED to go to grandson’s graduation: a lift-equipped van. Will sell or trade a motor-home to buy the van. Any tips, leads? Fran, (509) 447-44090.
Answers to the request for tips on swallowing problems were: 1) take smaller bites and 2) concentrate (!) You mean there aren’t any nifty new tricks?
Available: use rubber-backed indoor-outdoor carpet, earth colors. Suitable for covering outdoor ramps. Call Evi, 326-3234.
We still want people interested in a shoe exchange (different sized feet).
Boosting the Immune System
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.
American Journal of Clinical Nutrition, September 1994.
Hand-outs by Mail
Polio Outreach of Spokane maintains an extensive library of materials on Postpolio Syndrome and associated topics. Linda Scott keeps it up to date with the latest materials. She makes these available to you at regular support group meetings and by mail. Linda has listed below some key articles that may interest you. Articles that have been listed in past issues continue to be available.
Contact Linda Scott
1320 N. Hollis Spokane, WA 99201
“The Pain Relief Packet” – Five pages of pain treatment strategies.
Postpolio Syndrome: An emerging threat to polio survivors by James W. Aston, Jr., MD.
French Survey of PPS: Risk Factors Study & Medical Social Outcome by Diard, MD, Ravaud, MD, Held, MD.
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.”
Leadership Journal – Winter 1995
Share-A-Ride
This registry is designed to provide transportation to support group meetings. If you need a ride or you can provide one please call Denise at 926-5192.