Inspiration, news and knowledge from Polio Experience Network
No. 20: September/October, 1997
In This Issue:
Sharman’s News, Sharman Collins
“To Blame or Not to Blame,” by Dave Graham
ACCESS Spokane
“Osteoporosis,” by Daria A. Trojan, M.D.
“Positive Approach to Better Health,” by Sharman Collins
“Up and Over the Little Hill,” by Faye Van Patter
The P.E.N. & ink Link
Meet a PPS Friend, Denise Rew
POS Library
Sharman’s News
…..Life has changed at the Collins’ house! Rob and Chris are down at Washington State University. The nest is empty. Fall brings new activities–watching football games, raking leaves–it’s wonderful for me to feel so much better this year. ( For those who might be interested, Rob let me put an ad in the newspaper for his 5’5” red tail boa constrictor, “Beck”. We had many prospective buyers. The young woman who bought Beck left with him draped comfortably around her torso.)
…..On September 23, we will have a panel discussion. The people who have been treated at Futures Unlimited, Inc., will share information about their treatment and the results. Those on the panel will be Shirley Honn, Ray and Marzetta Honn, Delores Bendocchi, Peggy Lustig, Lois Roach, Pat Diaz, Carolyn Mecham, Elinor Young and me.
…..On October 28, Nancy Lee, Massage Therapist, will share her expertise with us. Nancy will discuss the many physiological benefits of massage, how to determine what kind of therapy you need, and how to choose the right therapist. She will also discuss with us relaxation techniques and will demonstrate a guided relaxation. This will be a very informative meeting for all of us. I am looking forward to seeing you there!
…..Meetings are at Shriners Hospital in the 5th floor auditorium at 6:00 p.m. Shriners is located at W. 911 5th Avenue. There is easy access from the free parking garage under the hospital. If you are able to join us for dinner in the 4th floor cafeteria, please be there by 5:00 p.m.
Much love from your friend, Sharman
To Blame or Not to Blame, That is the Question
by Dave Graham
Tears gushed as television cameras panned the faces of the tragic scene. The evening news broadcast a grievous situation where some children had lost their lives in a house fire. The insensitive reporter thrust a microphone in the face of the distraught mother. Between sobs she uttered, “How could God let this happen?”
Grief and loss often cause us to strike out in an effort to affix some blame for such a tragedy. When circumstances reach beyond my human ability to explain and justify, often God gets the blame.
It seems impossible not to empathize with the young mother at a moment like this. As I gazed into her eyes, I wished that I could come to her aid in some meaningful way. I also wanted to come to the defense of God who stands there in the midst of the scene, wanting to begin a long, difficult healing process — loving and comforting, not causing hurt and dispair.
It is my belief that our God does not desire cruel circumstances to befall me. He has given each of us an opportunity at a very special life. Unlike the life of an insect, mine is a thinking, reasoning kind of life. I am given the gift of making choices for myself.
When God created this world, He created some natural laws. We live in a grand scheme of cause and effect. If I step in front of a moving car – – if I jump off a cliff – – if my children are caught in a burning building – – all carry predictable results. We are given the responsibility of making choices.
Unexplainable things befall us in a seemingly random manor. I made no conscious choice which resulted in my having polio or post-polio syndrome. The chances are that the young mother made no circumstantial choice which caused the fiery death of her children. God is here in these occurrences as well. Yet for now He has not revealed to me how they fit into the whole picture. God did promise to be with me in those times when His grace and comfort are the only answers.
As I reminisce about my childhood as a ‘polio kid’, I am reminded of the role that my own father played in my upbringing. Realizing that his boy was more susceptible to failure and discouragement due to weakness and balance deficiencies, he could have hovered over me, overprotecting, doing the difficult for me. It must have hurt him when I would test my wings, time after time.
When my daddy let go of the bicycle, I struggled to maintain my balance. When I failed, falling and barking my knee, he stood by to console my cries and to help the healing process by cleaning my wound.
My heavenly Father does the same.
ACCESS Spokane
………………………………………………………Written by Dave Graham with help from these organizations:
………………………………………………………………………..C.O.R.D. (Coalition of Responsible Disabled)
………………………………………………………………………..National Multiple Sclerosis Society
………………………………………………………………………..Easter Seals Society of Washington
………………………………………………………………………..Washington Assistive Technology Alliance
………………………………………………………………………..Spokane Transit
………………………………………………………………………..Polio Outreach of Spokane
………………………………………………………………………..Washington Governors Committee on Disability & Employment ………………………………………………………………………..Client Assistance Program
………………………………………………………………………..Senior Wellness
………………………………………………………………………..St. Luke’s Rehabilitation Institute
………………………………………………………………………..Projects With Industry/S.L.Start & Associates
The New Spokane Arena… more than just accommodation.
…..“The arena was built at the right time”, said Kevin Twohig, General Manager of Spokane’s latest public landmark. “The A.D.A. (Americans with Disabilities Act) was in effect and our design engineers could take full advantage of the experience of other builders”. He presented an attractive brochure entitled Access Information for Guests with Disabilities. “This document is a complete presentation of the Arena’s services and it is available free, for the asking.”
…..There is an abundance of specialized seating areas, each with a terrific view of the event level. If a disabled person calls ahead, the Arena will arrange to have their families and friends sit along with them in these attractive areas.
To make your visit to the Spokane Arena enjoyable:
1. Call today for their free brochure. Phone (509) 324-7000. Keep it handy for your next Arena event.
2. Communicate your special needs to the ticket agent. Call early and directly to G & B Select-A-Seat Phone Center at (800) 325-SEAT. Or go to the arena box office located at 720 W. Mallon, open Mon-Fri, 10 AM to 6 PM. Independent ticket agents may not have the training or the vested interest in your comfort.
3. Arrive early and use the North parking lot. Here are the most handicap parking spaces and a power entrance door. If you simply want to be dropped off, you don’t need to pay if you tell the parking attendant. Then drive right up to the main entrance where there are curb cut-outs for convenience. There are also other parking lots with handicap spaces.
4. Always communicate your needs to the ushers. They have two-way radios that allow them immediate access to management.
5. Be kind and considerate to those who are trying to help you. These folks are well trained and have a genuine desire to make your visit to the Spokane Arena a pleasurable event.
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Barbara Kroemer’s “Career Fashions Etcetera”. Will design and tailor clothing for people in wheel chairs or who have special needs. She can be reached at 509-927-9892. She works out of her home at 8120 E. Liberty Ave., Spokane, WA 99212-2038. She has a computerized pattern making program that will make custom patterns for custom-fit clothing. She understands the needs of the disabled. Mike McMurtrie
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Senior Wellness Conference ‘97 – Displays and exhibits, workshops and presentations, eleven free health screenings, lunch, prizes, entertainment, FUN! Coming up Thursday, Sept. 11 at Spokane Community College, in the LAIR from 7:30 am to 4:30 pm. Call 467-9030 for details. –Kaye Herzer
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Hospital Group Launches On-Line Service
…..Without ever leaving their homes, Washington residents can learn more about their community’s health. In addition, they can tap into the latest research. Find out who runs health care in this state. See how your county’s health stacks up against the nation. Learn what public events of interest are coming. It’s all available on line at www.wahealthcare.org.
…..The Washington State Hospital Association unveiled the Internet website at its annual meeting in Spokane. The site was created by the association and its affiliates to help people better connect with the health care system.
OSTEOPOROSIS by Daria A. Trojan, M.D.,Dept. of Neurology, McGill University, Montreal; Co-Head of Post-Polio Clinic, McGill University Hospital.
Reprinted from the Australian Polio Network Newsletter April, 94. Sent to P.E.N. & ink by our friend Tom Walter, TomInCal@aol.com
Osteoporosis refers to a decreased density (mass per unit volume) of normally mineralized bone which is below that needed to maintain the skeletal function of adequate mechanical support. Fractures are the most important complication of osteoporosis, with associated pain, deformities and loss of function.
More than 1.5 million Americans have fractures attributable to osteoporosis each year. A reduction in osteoporosis-related fractures can be achieved by a reduction in falls and by prevention and treatment of bone loss. This essay will be primarily concerned with methods of preventing and treating bone loss, as result of osteoporosis.
Survivors of paralytic polio-myelitis may have a greater risk for osteoporosis -related fractures. Weakness from poliomyelitis may have caused a chronic reduction or complete absence of weight bearing activity, with a resultant reduction in bone mass. (This residual weakness from past paralytic polio may also predispose post-polio individuals to more falls.) In addition, a long period of immobilization at the time of acute poliomyelitis or after a surgical procedure could have produced significant bone demineralization. Studies show that as much as 30-40% of bone mass may be lost after six months immobilization. However, restoration of normal activity may result in reversal of disuse-related bone loss.
For these reasons, maneuvers to prevent a further loss of bone and to decrease the risk of falls may be necessary to prevent osteoporosis-related fractures in post-polio individuals. Unfortunately, few studies have assessed the effect of specific therapies on osteoporosis resulting from disuse and various disease processes.
Living bone is never metabolically at rest; it is continually undergoing a process of remodeling through new bone formation and bone resumtion (dissolving). This is accomplished through the action of specialized bone cells called osteoblasts and osteoclasts.
Osteoblasts are bone cells which produce new bone, whereas osteoclasts are bone cells which resorb or destroy bone. Usually, there is a balance between the process of bone resorption and formation. Osteoporosis can occur either with a relative increase in bone resorption or a decrease in bone formation.
The structure of bone is not uniform throughout the skeleton. There are two types of bone, trabular and cortical. Because osteoporosis involves primarily a loss of trabular bone, areas with trabular bone are at greatest risk for osteoporosis-related fractures, e.g., the spine and hip.
The two most common types of osteoporosis are post-menopausal osteoporosis and age-related osteoporosis. Both occur as part of the normal aging process. Bone mass normally increases to the age of 30. After a short period of stabilization, age-related bone loss begins. In women the rate of bone loss increases 2-3% a year following menopause.
However after eight to ten years, this rate of bone loss returns to aging baseline levels. Over their lifetimes, women lose about 50% of the trabular bone and 30% of the cortical bone, and men lose about 30% and 20% respectively. Thus, the degree of peak bone mass attained in early adulthood together with the rate of subsequent bone loss, will influence the probability of developing osteoporosis in later life. Post-menopausal osteoporosis involves primarily increased bone resorption, while age-related osteoporosis involves primarily decreased bone formation.
Other less common causes of osteoporosis need to be considered in a patient with bone loss. These rarer forms can include hereditary causes of osteoporosis, endocrinological abnormalities, diet-related osteoporosis, drug-induced osteoporosis (from drugs such as glucocorticoids, methotrexate and some anti-convulsants), disease related osteoporosis (e.g., from immobilization due to illness or neurological causes), and idiopathic osteoporosis (of unknown cause).
Many factors which can influence the attainment of peak bone mass have been identified. Race is important in the development of osteoporosis. Blacks have a greater bone mass than whites and Orientals of all ages, and thus a lower prevalence of osteoporosis. Osteoporosis occurs less frequently in persons from southern Europe than those of northern European descent.
Nutritional factors, primarily inadequate calcium and vitamin D intake are implicated in the development of osteoporosis. Our need for calcium increases as we grow older because of less efficient intestinal calcium absorption, and other causes. The recommended calcium intake for young adults is 750-1000 mg. per day.
Healthy pre-menopausal women over age 30 need about 1000 mg. per day (the amount contained in one quart of milk) and pregnant and lactating women need 1500 and 2000 mg. per day, respectively. Individuals over age 50 need 1500 mg. calcium per day. Unfortunately, the average American woman consumes less than 500 mg. per day and is thus in a chronic state of calcium deficiency.
Vitamin D is needed for the intestinal absorption of calcium. The active form of vitamin D is produced in our skin by a reaction stimulated by ultraviolet radiation (in sunlight). Certain behavioral factors important in the development of osteoporosis have also been identified. Daily weight bearing activity is essential for skeletal health. Studies have shown a direct relationship between weight bearing activity and bone mass. In addition, behaviors such as cigarette smoking and excessive alcohol intake can induce bone loss.
Prevention of osteoporosis is currently the only reasonable management approach for this condition. An adequate calcium intake should be maintained in pre-menopausal women. Calcium supplementation at doses of 1000 mg. per day or more may decrease post-menopausal bone loss by as much as 50% at some sites. However, calcium supplementation has not been shown to replace the effects of estrogen-replacement therapy in post-menopausal women.
Vitamin D supplementation may also be needed. Weight bearing exercise such as walking or aerobics (if possible) should be encouraged. There appears to be a relationship between the degree of weight bearing exercise and bone mass. In addition, a regular weight bearing exercise program has been shown to increase bone mass in post-menopausal women. Cigarette smoking and excessive alcohol intake should be avoided because these behaviors can be damaging to the bone. If possible, drugs that can cause bone loss should be avoided.
In those patients who have a low or relatively low bone mass, medications may be necessary to reduce post-menopausal and age-related bone loss. Currently the most effective treatment for this is estrogen-replacement therapy at menopause. Estrogen therapy is most effective when started early after menopause. Estrogen therapy can prevent early post-menopausal bone loss, can increase bone mass in the spine by 5% in women with osteoporosis, and can reduce fractures by 50%.
Estrogen use, however, has certain associated risks. In women who are unable to take estrogen, or in men, calcitonin can be used. Currently calcitonin is administered intravenously. A form of calcitonin which can be administered with a nasal spray is available in Europe and Australia, and is undergoing evaluation for use in North America.
(Tom’s Note — This Calcitonin nasal spray has recently become available by prescription in the United States, but I haven’t had time to gather more info about it.)
Calcitonin has been shown to transiently increase trabecular bone mass and to retard bone loss from cortical bones in post-menopausal women. Fluoride increases bone mass; however, the bone formed was found to be abnormal and more susceptible to fractures. It is possible that a lower dosage of fluoride may still be found helpful. Other possible treatments that are currently undergoing evaluation are biophosphonates, parathyroid hormone, and growth factors.
The prevention of osteoporosis-related fractures should also include strategies to reduce the risk for falls. Prevention of falls can involve various measures such as discontinuation of sedating medications, use of a leg brace, use of a cane or crutch to improve balance, use of rubber-heeled shoes, absence of throw rugs, and a night light.
In conclusion, though much work remains to be accomplished in the prevention and management of osteoporosis, some recommendations and specific treatments are available. New medications may become available in the next decade that are more easily administered and are more effective in treating established osteoporosis.
(Tom’s Note – The prescription drug Fosamax has also become available – but the dosing instructions make it awkward to use; and any negative effects of long-term consumption are unknown.)
POSITIVE APPROACH TO BETTER HEALTH
by Sharman Collins
Since I was diagnosed with PPS in January of 1991, I have learned a lot about how to approach health problems. When dealing with a disease such as post-polio syndrome, I feel it is a necessity to formulate your own “battle plan.” I hope that sharing my plan will help you find ideas you can use. Your attitude is crucial.
FAITH – Faith that God is in control of my life is the cornerstone of my attitude. My body is subject to various diseases, injuries and assaults. God gives me the initiative and common sense I need to explore different treatment options. Ultimately, I know that the Lord will provide me with the emotional strength to withstand any circumstance that He allows in my life. But He does expect me to use the brain power He has provided me to improve my physical condition.
GATHERING RESOURCES – It is essential that you educate yourself about post-polio syndrome. Read the available literature–but do not accept the opinion that there is nothing that can be done to improve your condition. There is usually something that can be done. I believe that a sympathetic and compassionate physician is an essential asset to your health plan. He or she must be willing to listen and try new and different treatment options. Newsletters from other support groups are fantastic resources for new treatments. New York Post-Polio Connections and PPASS are among the best. Following are the treatment options that have helped me the most over the last six years.
FUTURES UNLIMITED, INC. – I went to Futures Unlimited, Inc., in August of 1996 and also in February of 1997. Since being evaluated and treated by Ed Snapp, P.T., I have regained a phenomenal amount of strength and function. My improvement in muscle strength and endurance has been steady over the last year. Futures Unlimited, Inc., offers treatment that is the closest thing to a cure that is available to us.
MASSAGE THERAPY – Frequent massage keeps muscles moving. My therapist, Nancy Lee, works on me two to three times a week. Increased circulation, reduced pain and muscle cramping, and decreased muscle tightness are a few of the many benefits of massage.
PHYSICAL THERAPY – My physical therapist, Bob Paull, identifies problem areas where I have muscle imbalances. He helps me with strengthening and/or stretching exercises, posture and gait control.
DIET – I carefully watch what I consume. Extra pounds translates to extra effort for weak muscles. A nutritionist can be a valuable resource. Two books on nutrition that have been beneficial to me are THE ZONE, and MASTERING THE ZONE by Barry Sears, Ph.D.
SUPPLEMENTS – Products that enhance cell function seem to be most promising. Mannetech Phytochemicals–especially their Plus and Mannaloe– have helped me. Glucosamine and chondroitin sulfate has reduced my joint pain and stiffness. Tahitian Noni Juice is believed by some to help central nervous system function and has definitely improved my digestion. I find that Shaklee vitamins are easy for me to digest.
EXERCISE – Since my treatment at Futures, I am able to swim three times a week for 23 minutes. Plus, I am able to do 30 minutes of prescribed stretching and strengthening exercises daily. That is a 100% increase over a year ago.
DRUGS – Pain medications that are commonly prescribed for persons with post-polio have not worked well for me. I took prescription anti-inflammatories for two years and had severe digestive problems. I now take just small doses of ibuprofen for pain. Six years ago I began to take Eldepryl and I feel I continue to benefit from it.
FAILURE – Many of the treatments I have tried have not helped. I took part in a two-year program of electrical stimulation in Toronto, Canada, which seemed to be of very little benefit to me. I went to a chemist who attempted to “balance” my blood chemistry and thus improve my health. That made me very ill. I have tried Mestinon–and had an allergic reaction to it. My attempts at exercise before I went to Futures Unlimited caused me increased weakness. Some of these options, however, may help you. Keep your mind open and optimistic. You won’t find any help if you let an attitude of complacency or fear of failure guide your behavior. Actively seek improvement.
If anyone has any questions about any of my ideas, please contact me. And I would love to hear from you about different treatments you have tried. Write a letter to the editor in care of LINK if you have ideas to share. Has anyone tried acupuncture? Or blue-green algae? Bio-magnets?
Up and Over the Little Hill
The meeting notice sent to the members of Polio Outreach of Spokane, informing us of our summer picnic on July 26 at Camp Caro, read “You have driven past this little chunk of heavenly ground many times and didn’t even know it was there.”
Weather was perfect and we packed up a few utensils and my family’s favorite potato salad and off we went to attend the pot-luck luncheon at 3:30 PM. We followed the instructions to the park but soon ran out of paved road. Thinking we had made a mistake in the directions, we became confused. Then I remembered reading, “Continue up over the rise to enter the park.” What a lovely sight at the end of the road, truly a little chunk of heaven.
The camp included beautiful groomed grounds with a rustic log building for us to enjoy our afternoon together. We had access to all the tables and chairs that we needed to spread out the many hot dishes, salads and yummy desserts that all had brought. After several trips back for a “refill” at the food tables we all sat back and were entertained by Dave Graham on keyboard and Ron Haack on guitar and singing. They opened themselves up for song requests and did a great job. We also received song sheets with many of our favorite songs learned in our youth. In a relaxed and fun time we all joined in and sang until it was time to go home.
We had some surprise visitors: Rona Nelson of the Yakima PPS group; and a real treat to meet face-to-face, Sheila Tohn from New York. She is also known to PPS Internet users as Oldnurse. She came all the way from the east coast to visit her polio friends that she had met on the Internet.
I want to thank Susan Graham, Kay Haack and Elinor Young’s niece, Amy, for digging in and doing all the many chores involved to make our day a happy memory.
I especially enjoyed the day. Not only did I get to be with my post-polio family, but I was able to bring my favorite person, my husband Buzz. He suffered a stroke in March of ‘96 and has been unable to attend our monthly support group meetings. With many months of physical rehab and the prayers and love from friends and family, he is doing great.
With tummies full and our hearts full of laughter, it was hard to say goodbye.
In this coming year as we all go through pain, fatigue and frustrations, let’s remember “Up and over the little hill, we have each other.”
God bless you all, Faye VanPatter
P.E.N. & ink Link … a link with each other
Our friend John Nydegger writes that he has a set of hand controls for a car that he will give to someone who needs them. They are universal, coming off of a left hand installation. They may work for right handers as well. Call him at (208) 743-9679
A Tip
Rosa Kent began using a wheelchair about a year ago. How could Rosa give her niece a birthday party? As each guest arrived, they were handed a piece of paper with a job written on it. All the jobs got done and everyone had a great time. This may be an idea you would like to try even if you’re not 87 as Rosa is.
Comments from Readers
“Thanks for the useful info as I cope (or at least attempt to) with recent post-polio bout.” W.S.
“Thank you for all your help! I really appreciate it.”S.G.
…And thank all the rest of you who let us know that we are helping. That’s what we try to do, and it gives us great joy to do it!
Do you have a question, comment or a need? Write to P&I Link, 24104 N. Jim Hill Rd., Chattaroy, WA 99003.
Or E-Mail polionet@polionet.org
Meet a P.P.S. Friend
Hi, I am Denise Rew and I had polio in January of 1953. At the time I was married and had a four-month old baby. I spent my first anniversary in St. Luke’s hospital in Spokane. On our anniversary, doctors told my husband that I would never walk again. Well, I fooled them.
I spent three years in the hospital. Then I went to Boise, ID for six weeks to learn to care for myself. When I came back from Boise I could take care of my baby. Then I had two more babies. I had three babies in diapers for awhile, but I managed. Whew! More recently, I started to lose my balance and get weaker so I had to start using a cane, then to crutches and to a walker. Now I have to use a wheelchair or a scooter when I go shopping. I never miss a support group meeting. I might miss something good.
Polio Outreach of Spokane Library
Your resource for information on post-polio syndrome and disability issues.
Twelve popular articles available for the asking:
Packets for Newcomers and for Physicians Basics of Post-Polio Syndrome Coping Skills Diagnosis of PPS Energy and Fatigue Family Issues and Understanding Pain Control PPS Therapies – Treatments – Exercise Ed Snapp & Futures Unlimited, Inc. Fibromyalgia Sleep Apnea Vehicle Adaptations – Lifts – Accessories
Social Security – Health Insurance Info
Our librarian is Darlene Hansen. Simply write her at: 14627 E. Emery Rd. Chattaroy, WA 99003 or call her at (509) 238-4512
or E-mail her at
darlenekh@juno.com