Inspiration, news and knowledge from Polio Experience Network
No. 24: May/June, 1998

In This Issue:
Sharman's News, Sharman Collins
"Riding the Ups, Downs and Back Ups," by Elinor Young
ACCESS Spokane
Computer Connections
About Those Magnets...
The P.E.N. & ink LINK
An Explanation to Our New Readers
"What is the Clinical Presentation of Post-polio Syndrome and How is Diagnosis Confirmed?" by Spector and Sivakumar
POS Library (by Darlene Hansen)
Some Interesting Stats

Sharman’s News

.......What an exciting spring and summer for our family. Our new home will be completed in June. Sorting, packing, cleaning, and keeping the house picked up so potential buyers can drop by and look is a frustrating task. And as of next week, my new hobby will be in full swing! Our son, Ken, and his wife, Marnie, and our grandson, Kenny will be moving into their new home--close to us. Ken and Marnie, both dentists, will begin practicing with my husband.
.......Happy Seventh Birthday to Polio Outreach of Spokane! Our first meeting was in June of 1991. Most of the original attendees continue to come and share their concerns and suggestions with the rest of us. Their input to the group is invaluable. Come and share birthday cake with us at the June meeting.
.......On May 26, we will present information on topics of interest to all those concerned about post-polio syndrome. Some of the topics to be discussed are as follows: Causes and symptoms of post-polio, diagnosis, exercise and available treatments.
.......On June 23, Bob Paull, Physical Therapist, will be our speaker. Bob is very knowledgeable about post-polio. He will discuss proper body positioning and mechanics. Bob is our most popular speaker so be sure and arrive early so you can get a good seat.
.......Our summer picnic is scheduled for Saturday, July 25, at Camp Caro. This is a beautiful location for a picnic--plan on attending this great annual event. If you want to help, contact Kay and Ron Haack at 926-7319. Polio Outreach of Washington will be holding their summer picnic on Saturday, August 8. Members from all support groups are invited to Ellensburg for a day of fun.
.......I'm looking forward to seeing you on May 26 and June 23 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

Riding the Ups, Downs and Back ups
by Elinor Young

Lately I’ve been musing about the roller-coaster ride that has characterized my body’s physical state throughout my life.

There was childhood polio followed by fairly good functional recovery into adulthood. Then post-polio syndrome ended the career I had dreamed about and aimed at from childhood. That career lasted just seventeen years. I was a Christian missionary in the interior highlands of Irian Jaya, Indonesia, working with a delightful mountain tribe. Those years were not only tremendously fulfilling but also physically taxing. My body couldn’t keep up with the demands and I had no choice but to return to the States in August, 1991. I was on the fast track of PPS deterioration. By late 1996 I could walk only a few feet, needed a respirator 18 hours out of 24 with no more than four consecutive hours free from it, struggled through thick chronic brain fatigue and needed prescription pain relievers and sleep aids. Every few months measured new decline.

The decline was reversed eighteen months ago when I underwent treatment at Futures, Unlimited, Inc.1 Now I’m walking, off the respirator entirely, clear-brained, off the Rx pain and sleep meds, better in other ways and improving every day.

“So why the philosophical musing?” you ask. “Just enjoy and get on with life!”

I certainly am doing that. But, remembering that I am a missionary, you can guess that the spiritual aspect pervades how I see everything. In fact, did I say that it was post-polio syndrome that brought me back from Irian Jaya? Actually, I don’t believe I’m a mere pawn of circumstances. I know that God was in control while I was on that down hill “toboggan ride,” and I know he is in control now as it goes uphill again.

Still, I have to ask myself, what is it all about? Part of the picture I can see plainly. Some areas I can only guess at and about others I don’t have a clue. But it does seem that maybe some of my dreams will be realized, after all. Dreams I had thought impossible just two years ago. So I ask, how much do I need those dreams to be fulfilled?

Among the Psalms that Israel’s King David wrote is one which expresses part of my musings. It is a song written when he, too, was pondering the ups and downs. He wrote:

In times of trouble, may the LORD respond to your cry. May the God of Israel keep you safe from all harm. May he send you help from his sanctuary and strengthen you from Jerusalem. May he remember all your gifts and look favorably on your burnt offerings. (Interlude)

May he grant your heart's desire and fulfill all your plans. May we shout for joy when we hear of your victory, flying banners to honor our God. May the LORD answer all your prayers.

Now I know that the LORD saves his anointed king. He will answer him from his holy heaven and rescue him by his great power. Some nations boast of their armies and weapons, but we boast in the LORD our God. Those nations will fall down and collapse, but we will rise up and stand firm. Give victory to our king, O LORD! Respond to our cry for help.
[Psalm 20, The Living Translation]

David starts out with a cry for help then confidently declares his trust that God will do what is best, right and joyful, and ends with a cry for help again, because he hasn’t yet seen his request be fulfilled.

Recently a friend reminded me of something I wrote when my PPS was quite bad. On an e-mail post-polio discussion list, someone had said that, while still a child, he became very disillusioned about God. He had been taken to a healing meeting and was blamed (“must have a fatal character flaw”) because nothing happened. Several other people on the list said they had had similar experiences, and were similarly blamed for their failure to recover fully. Their child-like minds drew what seemed to be the obvious conclusion: their cry for help hadn’t been heard.

Part of their story fit mine. I told the e-mail list that I had also been taken to a healing meeting when I was about nine. I also was not healed. But I wasn’t blamed for it. My parents knew better, and so did I. I knew that God could have done it. I didn’t know why he hadn’t, but I did know I could trust him.

Then I told the list:

“... like the rest of you, I get miffed too when people think they have to come up with a reason. As if God needs us to defend Him! If we could totally figure him out, he would be on our level and not be God at all. Nor can I blithely say that I have learned from God that my polio is good. Of course it isn't. It's awful!! Pain is pain, and it hurts. ...

“I don't know reasons, but I have seen good in the bad. I have discovered that because I had polio I am able to draw more joy out of this broken world than many ‘normal’ folks. Life in Irian Jaya, Indonesia was rough. It ruined the health of strong, big men. And here I was, all 4ft.-7in. of me, with a large ‘hitch in my get-along;’ I couldn't run, jump, etc. But I had the privilege of living that marvelously rewarding and fascinating life for 17 years. Every day my body was my reminder of what an amazing thing that was. As a result, I found in it far more joy and satisfaction than some of the physically normal missionaries who had lost that sense of wonder. And now, even forced to be on my bed so much with PPS, the smallest things can give me pleasure that other people can't get from that same thing. Ironically, I am the one who in that sense has a better ‘quality of life.’”

Now that I’m better, do I still believe that? You bet!! A few brave souls have dared to ask me, “What if your improvement doesn’t last?” Well, I’d certainly know the routine! And I know my present strength is bound not to last indefinitely ... if nothing else, old age will take over at some point, if I live that long. Of one thing I am certain. God is not a cosmic genie. I cannot manipulate him. Nor is he a divine bully. I can trust him.

You can see that my musings have not led me to any knowledge of a predictable style of life. But they have filled my heart with a better joy than that. Yes, I am enjoying to the hilt my new greater level of strength and health. I relish the ability it gives me to be involved in the kinds of things I was made for. I thrill at the prospect of fulfilled dreams.

My reflections have led me to realize that those things, though wonderful, are not the greatest joy. The greatest joy is the same joy I had when I was flat on my back on my bed for hours on end. It was more than a mere positive attitude triumph over circumstances. Rather, it is the joy of trust in a trustworthy God. That is what liberates me from emotional slavery to my circumstances. I don’t need my world to be “up” in order for me to be “up” and I don’t need to be “down” when it seems “down.” I’ve been through the ups, the downs and the back ups, and the joy of that trust has remained constant, because God does.

King David said it:
“May we shout for joy when we hear of your victory, flying banners to honor our God.”
_______________________________
1. See Website www.polionet.org/futures.htm or contact: Futures Unlimited, Inc., 8084 Highway 50 East, Columbus, Mississippi 39702, U.S.A. (622) 327-7333

About Those Magnets...

There has been a lot of interest in using magnets for pain control. Our friend Rick Martinek from Milwaukee, WI, (polioinfo@EARTHLINK.NET) compiled this list of companies who sell them. This is not an endorsement, just a starting point for anyone who wants to find out more.

MAGNAFLEX INC. (BlOflex products), 3370 NE 5th Av, Oakland Park, FL (Florida) 33334 954/565-8500

MAGNETHERAPY, INC. (Tectonic products) 950 Congress Avenue, Riviera Beach, FL (Florida) 33404 (561/882-0092, tectonic@slinet.com)

NIKKEN, one of the largest network marketing companies in the world, has its U.S. headquarters in Irvine, California. To find an independent distributor call, toll-free, 888/2-NIKKEN (888/264-5536).

NATURE SLEEP SYSTEMS, Magnet-X, #82180 Pegasus Way NE, Calgary, Alberta, Canada T2E 8M5 (403/291 - 3090, 800/667-0000, nss@nssbed.com

ENViROTECH PRODUCTS, 17171 SE 29th Street, Choctaw, OK (Oklahoma) 73020 (405/390-3499)

MEDICAL MAGNETICS OF HOUSTON, P.O. Box 2941, Spring, TX (Texas) 77383-2941 (713/524-2220) 

P.E.N. & ink Link

For security reasons, we have not printed the e-mail addresses of the folks making the requests below. If you can help them, contact us at polionet@polionet.org and we will forward your reply to them. Thanks!

LOOKING FOR FRIENDS:

“For months, I have been trying to locate a lady that I went to school with back in the mid or late forties. She was a polio survivor and I have tried many ways on the Web to find her. She and I used to sing harmony together and she had a beautiful voice. I would not ask you to send me her e-mail address but if you should have it, I would appreciate it if you would send her mine. She knew me as Nella Weldon Cook. Her name at that time was Dorothy Dupree and I would assume that she might live in Texas perhaps the Dallas/Fort Worth area. We attended the same school in Mabank. She has been on my mind a lot lately and I would really enjoy getting in touch with her.” Thanks, Nell
e-mail polionet@polionet.org and we'll forward Nell's e-mail address to you.

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“Looking for a 1953-54 friend, Deral G. McKeel, who spent a hellacious year in Dunnellon, Florida. And left Richard Halliburton with me when he moved back to Oregon. I have never forgotten his courage.” -- Amy
e-mail polionet@polionet.org and we'll put you in touch with Amy.

 

WANTING A NEW FRIEND

"I had severe bulbar and paralytic polio in 1945 at age 22 while living in the S.F. Bay Area... married with one child. I was able to recover enough to take care of my household, my husband, and two children. At the present time, I have too much weakness in my legs and arms to do many normal things. I would like to have contact with someone who has the same problems."
e-mail polionet@polionet.org and we'll put you in touch.

ENCOURAGING WORDS:

“Liked your Librarian's piece in the neat news letter. My raving about your wonderful website caused the South Bay (LA) PPS to start a Website.”-E.

Do you have a question, comment or a need? Write to P&I Link, N. 24104 Jim Hill Rd., Chattaroy, WA 99003, or e-mail polionet@polionet.org

TO OUR NEW READERS - An Explanation

Since Polio Experience Network has gone global with our Polionet domain Website, we have had steady growth in our newsletter subscribers. We make no direct charge for any of our services, so let us explain how we operate.

P.E.N. exists and operates entirely from private donations from people like you. We do not seek grants or public money.

It costs just over $800.00 to publish and mail a single edition of "P.E.N. & iNk." There are many other on-going expenses that go into maintaining the Website, the library and other operating costs.

When funds get low we simply post a notice to that effect in the newsletter. To date, our readers have responded generously.

One of our readers recently asked if she could make a donation as a memorial for a deceased friend. Our answer is most certainly, YES. We will be happy to acknowledge such a gift with a card to the person's estate and with a mention in the newsletter.

At this time, approximately 15% of our readers are making 100% of the donations. We thank you for your faithfulness and encourage others to participate.

Send donations to:
Polio Experience Network
S. 508 Shoreline Drive
Liberty Lake, WA 99019 

Editors comment: We are continually hearing from readers who are concerned because their physicians seem to know very little about post-polio syndrome. In fact, one of our most popular library requests is for the PPS packet for physicians. We believe the well informed patient is his or her own best advocate.

What is the Clinical Presentation of Post-polio Syndrome and How is Diagnosis Confirmed?
by Sidney A. Spector and Kumaraswamy Sivakumar

The manifestation of progressive weakness, atrophy, muscle or joint pain, and fatigue in a patient with a history of paralytic poliomyelitis suggests the diagnosis of post-polio syndrome (Table I). To confirm this diagnosis, however, the clinician must exclude other known medical, neurologic, orthopedic, and psychiatric disorders that may explain the development of these new symptoms.

Because virologic confirmation of polio infection was not available until the 1950s, physicians must obtain a well-documented clinical history to determine the likelihood of previous polio infection in older patients describing these symptoms. A history of an acute febrile illness during childhood or adolescence that resulted in partial or complete paralysis of limb or bulbar musculature, followed by partial recovery of motor function with functional stability, is suggestive of previous polio infection, especially if it is associated temporally with a polio epidemic. The clinical presentation of residual muscle atrophy, weakness, and areflexia in at least one limb with normal sensation, accompanied by histopathologic and electromyographic findings of chronic denervation, supports the diagnosis of previous paralytic poliomyelitis.

Table I - Clinical Features of Post-Polio Syndrome

PPMA = post-polio muscular atrophy.

____________________
This article was reprinted from Infections In Medicine (1997;14(6): pp.462, 465, 466, 471, 472, 474-478). Copyright 8 1997, SCP Communications, Inc., and appeared subsequently on Medscape, http://www.medscape.com/Medscape/question/1997/jul/q208.html Used by permission.

Taken from "The Post-Polio Syndrome: Current Concepts and Treatment" by Sidney A. Spector, MD, PhD, Neurological Physicians of Arizona, Inc.; Kumaraswamy Sivakumar, MD, National Institute of Neurological Disorders and Stroke, National Institutes of Health.

MAY NOT BE REPRINTED WITHOUT WRITTEN PERMISSION FROM SCP COMMUNICATIONS, INC. http://www.scp.com

Polio Outreach of Spokane Library
Your resource for information on post-polio syndrome and disability issues.

NEW TO OUR LIBRARY:
"Changing Lanes - A guide to help when aging, illness or disability forces us into the slow lane." by Michael Creurer. Includes references to his personal growth through grief, how to make choices, and create a new life for ourselves responsibly.

**************

We want to draw your attention to a four hour documentary series, "Beyond Affliction: The Disability History Project" to be aired May 5 - 8 at 10 a.m. and 7 p.m. on National Public Radio. The series is said to include topics of awareness of disabilities without exploitation, disabilities in the job market, employment expectations and other issues.

Do you have a specific post-polio issue you would like me to research for you? Give me a call. DH

**************

I have had several requests lately for information on using magnets for pain relief. I have gathered four articles:
1. “What Are Biomagnets?” Polio Information News Flyer #25
2. “Response of Pain to Static Magnetic Fields in Post Polio Patients: A Double Blind Study” (Baylor College Study, 1997)
3. “Magnetic Healing Really Works!” (Dan Marino, Anthony Hopkins and others report on their use of magnetic therapy.)
4. Misc. testimonials, and a caution, gathered from Internet PPSers, and a list of six companies that sell them.

Your friend, Darlene

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 darleneh@cet.com
or visit the library web-site at www.polionet.org/library.htm

Some Interesting Statistics

According to a 1992 U.S. Census study, there are 49 million Americans with disabilities. That’s nearly one out of every five.

In 1994, 82% of the general population were employed. 52% of all disabled people were employed.

17.5% of Americans have some functional limitations. These might include, going up stairs, walking distances, lifting, hearing, seeing or having one’s speech understood.

Over age 65 over half of all Americans have a disability.

29% of all American families have at least one member with a disability.

People with disabilities have the same range of preferences, perceptions, attitudes, habits, and needs as people without disabilities.

The hotel and hospitality industry was one of the first to implement the access provisions of the A.D.A. (Americans with Disabilities Act). As a result, their revenues have increased 12%.

Some industries and advertisers cater heavily to the teen market which controls $67 billion in spending power. That is less than half that of the disability market. (Recent GAO report)

P.E.N. & ink,
mailing to over 800 individuals world-wide, to provide experience based advice and emotional support for Polio survivors, families and friends.
Mailing address. . . 508 Shoreline Dr., Liberty Lake, WA 99019 U.S.A.

Copyright © Polio Experience Network (P.E.N. & ink), 1998. .P.E.N. original materials may be reprinted in other newsletters as long as proper credit is given. Please send a complimentary copy of the publication to Polio Experience Network, 508 Shoreline Dr., Liberty Lake, WA 99019 U.S.A.

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