In This Issue:
Sharman’s News, Sharman Collins
Exercise, What’s Right For You, Mavis J. Matheson MD
Where Do I Find Peace and Comfort, Sharman Collins
History Revealed, Dave Graham
How Many Had Polio? Dr. Richard Bruno
“The Life You Have Been Living is Over,” Alex Looms
Linda’s Library (Linda Scott)
Recognizing our sponsors
Sharman’s News
…..GREETINGS! I hope you are enjoying the summer weather as much as I am. Soaking up the sunshine certainly makes me feel better! My husband and son, Rob, and I went to visit our son, Brian, and his wife, Heidi, in Scottsdale, Arizona in May. It was over 100 degrees every day! Lounging by the pool, riding my scooter on the bike trails, and eating salsa and chips kept me busy and happy. …..While we were there, I had the privilege of meeting with six of the ten board members of the support group Polio Echo, Inc. We had an enjoyable time discussing our mutual interests. They treated my son, Rob, and I to brunch at a local restaurant. In September, at a regional meeting, Polio Echo is hosting Hugh Gallagher, author of FDR’S Splendid Deception. If you would like more information about this meeting, contact Tom Ringofer at 1-602-655-0511.
…..Another memorable event of my trip was a ride through a field which left me with a flat tire on my scooter! My sons spent some time picking cactus out of my tires with tweezers. A can of pressurized air with sealant in it kept me mobile for the rest of our trip!
…..Our July program features Nancy Lee, President of the Inland Massage and Bodyworker’s Association, and several of her co-workers. They will be demonstrating and talking to us about the many benefits of massage for persons with post-polio syndrome. Before our meeting, Nancy will be available to teach a couples’ massage class. The class will start at 3:30 and be done by 5:30. Please contact me at 838-1689 if you are interested and if you need more information concerning cost, clothing, etc.
…..We have other exciting and informative speakers planned for the summer months. Plans are also being made for our summer picnic. More details will be available soon. I am looking forward to seeing you at the July meeting!
…..I’ll see you at Shriner’s Hospital in the 5th floor auditorium at 6:00 p.m. Shriner’s is located at W. 911 5th Avenue. There is easy access to the free parking garage and the 4th floor cafeteria. If you are able to join us for dinner before the meeting, please be there by 5:00 p.m. Much love to all of you, Sharman
History Revealed
by Dave Graham
A few years back there was a hi-way project to push Interstate 40 through the heart of Memphis, TN. As the story goes, some local people in this old southern city took a dim view of this as it would damage much of the city’s landmarks and historic beauty. As the Memphians came together to block the Interstate, the hi-way work went ahead. Many old homes in the core area of the city were bought up, and a large open swath of land gradually appeared as the structures were torn down. The locals were successful in blocking the project, but there remained a large void where once had stood many beautiful old homes, monuments to a past that is unique in our countries history. In an effort to restore the lost beauty of the period architecture the Evergreen Historic District was formed. People were encouraged to build new homes all in the flavor of the old south and in continuity with the structures that remained. The building designs would be approved by an architectural committee and the materials and appearance of the structures would recreate the beauty of the past. Years have passed and the project has reached fruition. At a casual glance it is hard to tell the new structures from the old. The traditional brick homes with their corners, gables and mortises lead the viewer on a grand deception. In remembrance of this unique project, each year a ‘Tour of Homes’ is held, allowing individuals an opportunity to look inside the dwellings, both new and old. The comparisons and similarities are a wonderful study in man’s desire to hold on to the qualities of the past. At this point I feel a certain turpitude in casting any discouraging comment on such a word picture as this. Should I leave the scene tidy and story-like, ending happily ever after? I think not because my perspective as a disabled person is one of foreboding detachment. There is no place in this picture for anyone but the able-bodied. My ‘Tour of Homes’ was a bleak reminder of my limitations as I encountered one barrier after another. Endless door sills, sharp angles, narrow hallways and stairway after stairway served to demonstrate the roll of disabled people in the past.
As I ponder a tasteful conclusion to this article my mind harbors a prayer…”Thank you Lord for the A.D.A. (Americans with Disabilities Act) and the people that wrote it into law.”
The Professional and Business Community Responds to our Needs.
The printing and postage costs of this newsletter are about $400.00 per issue. There are also numerous other costs involved with the program of Polio Experience Network. Efforts such as ours are usually financed by large charity organizations. Ours, however, is not.
…..We greatly appreciate the number of small donations we get from you, our readers. Thank you! It adds up to an important part of our income, though not even half of our need. So three years ago we initiated a special golf fund raiser, for our able-bodied friends, called the Firecracker Scramble. It has proven not only to be a financial success, but a very popular golfing event as well.
…..Contrary to popular assumption, the funding does not come from profits on the entry fee charged to golfers. If fees are too high, golfers would not participate regardless of our good works. The funding comes from generous professional people and companies who want to align themselves with the work that we do and with the disabled community in general.
…..With that said, I want to devote a few short lines to recognizing these people in hope that you will do the same. Their success rides on our patronization. Won’t you take notice just who is giving their funds to this important work? The next time you must patronize someone, make an effort to seek out these kind folks. Farmers & Merchants Bank Voice-Tel of Washington Great Harvest Bread Company Riessen’s Orthotic & Prosthetic Services Inland Medical & Rehab Cheney Owl Pharmacy J.Gray’s Paint & Design Becker Buickalso professionals Dr. GG Schnieder, Orthodontist Dr. William F Corell, MD
and the fraternity, Sigma Alpha Epsilon at Washington State University
WHERE DO I FIND COMFORT AND PEACE?
By Sharman Collins
Post-polio syndrome creates havoc in my life. My worst times of stress and pain are in the middle of the night, after my pain and sleeping medication have worn off. In my distress, I call on the Lord for comfort and peace. Psalm 23 is of great solace to me during my middle of the night sojourn with pain and panic.
“The Lord is my shepherd, I shall not be in want.”
He takes care of me. He meets all of my needs–including those for love and security.
“He makes me lie down in green pastures,”
He knows when I need to rest. And He provides a spiritual oasis–a hiding place–where I can rest in peace.
“He leads me beside quiet waters,”
He knows how to calm me. When I am still, I can hear His voice.
“He restores my soul.”
He gives me peace and contentment, in spite of my difficult circumstances. He fills me with songs of deliverance.
“He guides me in paths of righteousness for His name’s sake.”
He directs my behavior. He desires to use me to glorify His name.
“Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me.”
No matter how bad my circumstances seem, I need not be afraid, for He is always with me. He guides and disciplines me.
“You prepare a table before me in the presence of my enemies.”
He protects me from unjust criticism and treatment. He anticipates my needs.
“You anoint my head with oil. My cup overflows.”
He has marked me as His child and blessed me beyond measure. His loving care is always with me.
“Surely goodness and love will follow me all the days of my life, and I will dwell in the house of the Lord forever.”
He has given me the grace to lead a victorious life for Him and I will be with Him for eternity.
How Many People Had Polio?
…..In 1987, the Public Health Service’s National Health Interview Survey asked people about polio. From their responses, PHS estimates that 1.63 million living Americans had polio. That includes 641,417 who had paralytic polio and almost a million who had non-paralytic polio.
…..PHS says it has confidence in the paralytic number but not in the non-paralytic number. Why? Well, do you remember every flu you had when you were a kid? No. Now consider this. During this century, the actual ratio of non-paralytic to paralytic polio has been 10-to-1. So if there are 641,417 people alive today who verifiably had paralytic polio, there may be 6,414,170 people who had non-paralytic polio. …..The confusion gets worse. Two studies from the `50s found that about 33 percent of those diagnosed with non-paralytic polio actually had paralytic polio. So, there could be 2,758,093 Americans who had paralytic polio! Does that suggest more than 27 million polio survivors overall?
…..Probably not, but it’s a worrisome notion for those who thought they had escaped disability: Even if you had non-paralytic polio, your brain stem — and probably your cord — was still damaged. Anyone who had polio, paralytic or otherwise, can have post-polio sequelae. Aren’t you glad you asked? — Dr. Richard Bruno Reprinted with permission from New Mobility magazine (800) 343-4116
“The life you have been living is over….”
by Alex Looms …..This is a story of adapting.
…..The Alex most of you know is a vastly different Alex from a few years ago. During my life I have found that though I might not be as good at some things as others are, if I was determined enough I could excel in other areas. In the 20 odd years I raced bicycles my best finish ever was 2nd.
…..My goal was always to do the best I could and always finish the race (many others would quit!). I spent years restoring cars and boats. I didn`t have the money some had to hire work done, so instead learned to do skills required. Sure it took longer but the end result was I could stand back and say, “I did it myself.” For financial and physical reasons I’ve had to give up both cycling and my antique boats. I never saw the attraction other people had for pets and animals. I grew up in the city, had a couple of cats as a kid. Was uncomfortable around, and in some cases scared to death of, most animals. I got over my fear of dogs less than ten years ago.
…..When I first met Ann in 1992 she had horses. You could have tied a $1000 dollar bill on one of those horses, and even as money-motivated as I am, I would have been too frightened to go grab it. Gradually I got to the point where I would ride one of them. Then PPS came along and upset my nice little life. The pain and fatigue took over. One by one things I enjoyed doing went by the wayside. There was no point in brooding over it, things change. Sure I couldn`t do some things but there had to be some activities I could pursue. I decided to devote time to the horses and our home.
…..I am blessed to have Ann in my life. We got married after my PPS problems started. By October `94 I had to stop working. We managed to get through the financial upheaval that caused. Ann had been saving up to buy another of the Norwegian Fjord Horses. That money went to my scooter and van lift. When the boats sold we repaid the “horse account” and bought Fjell, a pregnant fifteen year old mare, and Toby her colt from 1995. We had also made the decision to breed Merete, our five year old mare. Now the man who in 1992 could barely work up the nerve to touch a horse was adding four more of them; two yet unborn!
…..In my job selling cars and trucks for Lake City Ford, I met a young woman and her husband. She had retired, from being a veterinarian, to write books. (I later learned she had been hurt a couple of times too many by sick horses and decide not to get hurt anymore) She had just finished a book, The Complete Guide for the Foaling Attendant. (This later became the most important book I`ve read) She, like others, was sorry to see what PPS was doing to me. After a visit to see her horses she got on her computer, where she had access to medical info for doctors only, and downloaded just about every technical article written on PPS. She took on the role of Alex’s horse reproduction mentor. I can’t tell you all the fun we`ve had with E-mail and visits. Over the last year I`ve been obsessed with the care of our mothers-to-be. Lots to read and learn most of which required almost no physical exertion. I spent time grooming and touching them, they didn`t care if I ran out of energy and needed to rest or quit halfway through being brushed. They were satisfied with anything I could do. Well, as all of you know, the day was coming that all my new knowledge would be put to the test. I wanted to be there to help deliver those babies. As time grew near I moved from the house to a tent right next to the corral. Great camping, if I got cold or uncomfortable a hot bath was just moments away. The Norwegian Fjord is wonderful horse. They require little care, are very good natured, and they love to eat. I mean they really love to eat. Left to their own devices they would eat until the looked like the Goodyear Blimp. Now we get to the fun part! Just before they start ‘labor’ they quit eating. So campers, as long as you hear them eating, no babies.
…..I am in total awe of the actual birth process! Freyja was born at 12:30 am on May 2nd. Within a half hour this baby girl untangled long wobbly legs and stood up. Within the hour she was moving around on her own by her mom. The whole family got to observe this miracle. By daylight mom and baby were walking around together. Yup, I was pooped but it was worth it. It was one of the highlights of my life. Fjell gave birth to a little girl, Britta, May 8th at 6 AM.
…..This was a great experience for me. If not for the changes PPS has caused in my life I would probably never had the time to enjoy this whole adventure. When my doctors decided I needed to quit work and give up activities I enjoyed to save my body, I was told “The life you`ve been living is over!”. But my doctor was quick to add, “Now you get to figure out how to live this one.” …..Yes, we’ve all been forced to adapt, but how we adapt and what we find that we can do is up to us!
…..Some of my closest friends are among those brought together by PPS and our Spokane support group.
EXERCISE – WHAT IS RIGHT FOR YOU
Mavis J. Matheson, MD
…..Many people with a history of polio can improve muscle strength and cardiovascular conditioning with an exercise program. [I],[2] One of the problems that people with Post-Polio Syndrome face is how much exercise they should be doing. We have all been told to conserve our energy. We know that too much exercise will further damage already weak muscles. We also know that if a muscle is not exercised it will lose strength. So, what should we be doing?
…..Determining how much we should do isn’t easy. We must learn to recognize fatigue. We must learn which pains mean overworked muscle and which are part of normal aging. We need to pay attention to our bodies and use pain and fatigue as signals. We have to let go of the “no pain; no gain” philosophy we learned while we were recovering from polio. We must also learn to use how we feel today to assess yesterday’s activity and plan for tomorrow. Dr. Agre and Dr. Rodriquez have shown that polio survivors can assess their own muscle fatigue. [3]
…..The key to exercise for people with Post-Polio Syndrome is to suit the activity to the amount of damage to the muscle. This damage may be a result of the original polio and from Post-Polio overuse. Different researchers use different methods of determining just how much a muscle or group of muscles is damaged and what exercises are appropriate. [I], [4]
…..After consulting with our doctors to assure ourselves that we don’t have some disease process other than PPS causing our problems, we must decide how much to do. What can we do when we don’t have a Post-polio Clinic and physicians willing and able to do four limb EMGS? Without using EMG, we can still look at our histories and we can feel how we are doing now. Using this information we can try to set up or get the physiotherapists (many of whom have little or no knowledge of post-polio syndrome) to set up appropriate exercise programs for us. I suggest you try to figure out what each of your limbs should do based on your experience with that limb.
…..For each limb, ask yourself “Which is the most severely involved muscle in this limb?” “Is that muscle weak?” and “Am I noticing signs of increasing weakness in that muscle?” Increased pain in the muscle, twitching, decrease in quality of movement, being able to walk shorter distances, having more trouble with stairs, more difficulty standing, muscle wasting, difficulty holding your arm up, driving, dressing and tiring with fewer and fewer repetitions during your regular exercise routine are common signs of increased weakness in a muscle or limb. Do you know of any reason other than PPS why that muscle may be weak? For example, has the muscle been immobilized recently? A limb that does not have any weakness is classed as no clinical polio [1] and you can use it like any normal limb. These are the limbs you can use to get a good workout for you heart and lungs (cardiovascular workout). Be active 3-4 times a week for at least 20 minutes getting your heart rate up to 60-80% of maximum. You can exercise these limbs like normal limbs. It is also sensible to do gradual exercises to maintain strength and flexibility. If you notice any signs of increasing weakness, you must reevaluate your limb and your exercize program for that limb.…..If your muscle is mild to moderately weak but shows no signs of increasing weakness, the limb would be classed as clinically stable polio.[I] You can exercise these muscles with care. They should probably not be significantly fatigued. Try exercising 3 times per week for periods of 10-20 minutes with frequent rests. Progressive resistance exercises (also called non-fatiguing strengthening exercises) with gradually increasing weights may be used to maintain and possibly gain strength. Monitor yourself carefully while you exercise and if you notice any signs of increasing weakness, you must reevaluate your limb and your exercise program for that limb.
…..If your muscle is severely weak, the limb is probably appropriately classed as severely atrophic polio.[1] Active exercise of the limb is likely impossible. Passive range of motion exercises may be used to maintain flexibility.
…..If your muscle is weak and showing increasing weakness, ask yourself “Am I doing too much or too little?” Unless the limb has been immobilized recently (for example, in a cast or on bed rest) you are probably doing too much. The limb should be classed as having clinically unstable polio.[1] You should try decreasing the amount of activity that limb is doing, use energy conservation, and get your rests. These are the muscles that are being damaged by overuse. You must not fatigue them. It is probably a good idea to stretch to maintain flexibility and range of motion. If the limb has been getting too little activity, you can try a carefully graduated program of non-fatiguing exercises. Monitor yourself carefully while you exercise and if you notice any signs of increasing weakness, reevaluate your exercise program for that limb.
…..Whatever your exercise program, continue to make changes to help you conserve energy. Pay attention to fatigue and rest when you are tired (before you are exhausted). If you are overweight, you need to lose weight. Dr. Peach and Dr. Olejnik found that patients who successfully control the factors responsible for neuromuscular overuse didn’t lose muscle strength.[5]
______________________ [1].Gawne, AC: Strategies for Exercise Prescription in Post-Polio Patients, In Halstead LS, Grimby,G (eds.) Post-Polio Syndrome (1995) pp. 141-164 [2].Fiflyaw MS, Badger GJ, Goodwin GD, Bradley WG, Fries TJ, Shukla A– The Effects of Long-Term Non Fatiguing Resistance Exercise in Subjects With Post-Polio Syndrome, Orthopedics, (1991) vol. 14:1253-1256. [3].Agre JC, Rodriquez AA, Neuromuscular Function in Polio Survivors; Orthopedics, (1991) vol. 14 no. 12-1343-1347. [4].Feldman, RK The use of EMG in the differential Diagnosis of muscle weakness in post-polio syndrome, Electromyogr. clin. Neurophysiol., (1988),28,269-272 [5].Peach PE, 01@k S. Effect of treatment and non-compliance on post-polio Sequelae Orthopedics. 1991; 14:1199-1203l
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Linda’s Library
A unique and valuable resource for anyone interested in post-polio syndrome.
from Linda Scott
Contact Linda by writing to 1320 N. Hollis
Spokane, WA 99201-3012
NEW in the LIBRARY
After receiving many requests from all over the U.S. and Canada for information, I’m reminded that our PEN & ink family has stretched beyond Eastern Washington. Each time new items are added to our library in Spokane, I will include as much source-information as possible, so that you can obtain the item locally. It is a pleasure to hear from you! New Mobility Magazine, May and June issues. May includes travel, disability issues and letters to the Editor from PP’s. June includes a feature on the Paralympics in Atlanta following the Olympics and the column by PP, Hugh Gallagher. For individual issues or full subscriptions call: 1-800-543-4116 ext. 480, have your credit card handy. How to Cope books 3 and 4, by LaVonne Schoneman. Thank you LaVonne. She is a PP with insight and talent, creating the “How to Cope” series. The paperback books include tips on coping, emotional support, facts about polio and humor. Good daily reads. To order: LaVonne Schoneman, 16734 8th NE, Seattle, WA 98155, 1-206-362-0627, E-mail – vonnejo.@aol.com . The set of four books is $24.00 including US postage, add $3.00 for foreign destinations. Using Humor to Flatten Out Your Pain:Mama, Get the Hammer! There’s a Fly on Papa’s Head and I’m So Glad You Told Me….What I Didn’t Wanna Hear, by Barbara Johnson. Word Publishing Co. These two books are the latest in this series of humorous, uplifting works. A favorite with our members. The Moods of Mother Nature (large print), Words to Inspire You (large print), Reflections on Life: Through the Eyes of a Poet and Our Journey Through Life, all by Stephen P. Mickey. Thank you, Stephen. He is a PP with a unique inspirational look at life… a fine daily read. His poetry is available in posters, greeting cards (regular, large print, Braille), plaques and book marks. Send a self-addressed, stamped business size envelope, for a product list/order form to: Stephen P. Mickey, P.O. Box 172, St. Nazianz, WI 54232, 1-414-773-2686. PAIN RELIEF, How to say no to acute, chronic & cancer pain! by Dr. Jane Cowles, published by Master Media. Chapters include: Chronic Non-malignant Pain Indentification, Realistic Treatment and How to Talk to Your Doctor About Pain. In The Shadow Of Polio, a personal and social history by Kathryn Black, published by Addison Wesley. Ms. Black is a journalist sharing many years of interviews and correspondence with polio survivors.
Stephen Mickey, the poet, would like polio survivors to participate in a child/disabled adult pen-pal program. You would write a letter once a month. Write PO Box 172, St.Nazianz, WS. 54232