Inspiration, news and knowledge from Polio Experience Network
No. 22: January/February, 1998
In This Issue:
Sharman’s News, Sharman Collins
“The Woods,” by Dave Graham
“The Eye of the Beholder,” by Elinor Young
The P.E.N. & ink LINK
Computer Connections
“Magnet Therapy, A Report on Recent Findings,” by P.E.N. staff writers
Bits & Pieces; Drug Alert for PPSers; About Those Ages; Humor
“Thank You” (subscription information)
POS Library (by Darlene Hansen)
Sharman’s News
HAPPY NEW YEAR! Nineteen ninety-eight will be a busy year for the Collins’ Family. We are building a new home–completion date is June 5. Meetings with the architect, builder, and designer keep me hopping. Lately, I have been dreaming about sink fixtures, bathtubs, carpet, tile, etc. And in May our son Ken and his wife Marnie and my grandson, Kenny, will be moving to Spokane! My new career as a Grandmother-in-action starts then. Break out the balls, blocks, play-doh, and riding toys!
…..Another year of great support group meetings is in the planning stage. In January, Dr. Bill Loomis will be our speaker. Dr. Loomis, in addition to being a Physician, is an Osteopath. He is equipped to perform complete rehabilitation through therapy, mobilization, and manipulation. In addition, he practices Homeopathy. Dr. Loomis will discuss with us the various services an Osteopath can render to help someone with post-polio. He’ll also explain the theories of Homeopathic treatment.
…..On February 24, Anne Phillips, an independent distributor of NIKKEN products, will lead a discussion concerning magnets and other technologies for non-invasive health and wellness. This will be an informative hands-on demonstration of these products. I’m 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
The Woods
by Dave Graham
For years I have lived on the edge of my disability, post-polio syndrome. One day I am restricted by physical limitation and pain, while the next, I feel like my old self again, ready to take on the world.
It was one of those good days, October 23, 1997. I went deer hunting with my son, Shawn. He is a big healthy guy, so I felt confident that my own limited physicality could not get me into too much trouble. It felt so good to be doing once again an activity that held so many good memories.
The evening hunt began shortly after Shawn got off work at 4:00 PM. Earlier I had come upon a new hunting area and I was eager to show it to Shawn. We had a doe tag and only one day left before the season was to close.
After driving into the area, we spotted three deer heading up a far bank to our right. Shawn exited my van and stealthily followed their path. I proceeded on, up hill to a wide spot in the logging road. I parked atop an open knoll.
I exited the van and walked in a South-Easterly direction for another 50 yards. Suddenly I heard Shawn’s gun bark out it’s loud report. Focusing my attention in his direction, to my right I could see through an open area only about 75 yards. There was movement, then a large animal came scurrying through the brush.
Now, I’ve been hunting for exactly 36 years. During that time I have harvested 13 deer. There was a time that I could recount each triumph, but now I need to be huddled around a camp fire to rekindle those memories. So when I spied this animal and it’s awkward gate, I knew Shawn’s bullet had met its mark. The deer had been hit in the hind leg and was now looking for a place to hide.
In an effort to finalize the kill, I raised my rifle to my shoulder, aimed at the animal’s neck and fired. My aim was true. The animal was hit, but it’s adrenaline pushed it onward. Experience told me that it would go down hill and that it would not go too far if unprovoked.
As I pondered my next move, I surveyed my position which was by then about 100 yards down into the forest from the van. I knew we had only a half hour of daylight left so I could not wait. I had to pursue. I figured Shawn to be another 100 yards to my right and the deer another 100 yards straight East, down into the deepest part of the forest. I was right.
Struggling downhill through the forest, it took me at least ten minutes to come upon the big animal. I made sure she was dead, then called out for Shawn. Moments later he came bounding through the underbrush wearing a smile ear to ear. There would be meat in the freezer this year.
After tagging the animal, the first thing we mentioned was the diminishing light. We had to get moving. As Shawn gutted the deer, I took both rifles and headed back up to the van intending to drive it closer to the kill. An animal this size would be hard to move.
As I trudged back through the forest, up hill toward the knoll, I was walking West into the fading sunset.
My disability makes walking under normal conditions a bit tenuous. But here in the tangles of underbrush and downed limbs I felt like a fish out of water. Carrying 20 pounds of rifles, it seemed like it took forever to climb back up that hill. When I reached the summit, the light of day was gone. In the slight glow of reflected light, I realized a grim reality. I could not see my van. I could not even see the road.
Now this becomes very hard to write. What, moments ago, was a lifetime of confidence in my abilities in the forest, suddenly became a questioning bewilderment. I staggered East, back up the hill, thinking perhaps the road had ended at the place where I left the van. Minutes passed. I ran into dense thicket. I fell. Picking myself up, my legs felt like Jello. With heart pounding, I headed West again, thinking I had not come far enough, but then I was going downhill. Again, I walked into dense forest and darkness. It was dark all around. I could barely make out the features of the land.
With a bit of fear showing in my voice I called out to Shawn. Thankfully he heard me as I explained my plight. His voice was barely audible despite the quiet of the forest. His only option was to drag the deer down hill. He called out for me to find an opening atop the hill for a reference point.
I headed back to the opening above me. I fell a second time, then a third. With deep gasping breaths, I had to rest.
The evening temperature had fallen to the low thirties. I had left my jacket in the van and I was getting cold as I perched on a wet stump. Without thinking, I pressed on to the East again, then South, then West, falling and failing. I called out again for some lick of confidence in hearing Shawn’s voice, but nothing. I whistled my loud piercing shriek. No reply.
I was lost. My physical resources wasted, my options were gone. There in pitch darkness, I fell to my knees.
For years I have openly claimed that I could rely on God to get me through my worst times. This was truly one of those times, so I prayed.
Little did I know that at that very moment Shawn was also praying. He had pulled the deer down to a logging road far below and had been calling out to me for what seemed like hours.
My plea to God was short and to the point. I sat there in the dark, blind, helpless, contemplating. If God was to lead me out of these woods, I was going to have to be upright and moving. I struggled to regain my feet. It was then that a strange confidence came over me. Without much effort at all I proceeded North. That made no sense. There was nothing out there but more dense forest, but somehow my feet carried me in that direction.
Minutes passed. A few stars shone overhead. Perhaps it was their brightness that revealed to me a loggers’ skid trail, a path of darker dirt in a dark surrounding. That was good. Experience told me that log skids usually lead down to roads. Moments later that single log skid became two dark lines- – tire tracks! I followed upward only another few feet and there, hardly more than an arm’s length in front of my face, stood our van. I laughed out loud, praising and thanking God.
As I started the vehicle, I honked the horn and turned on the brights. Far below me Shawn saw the beams through the trees. He left the deer lying in the road and fumbled his way up through the forest toward the light.
Well, you know the rest of the story. We picked up the deer and, as we followed the road back out of the forest, we recounted our experience.
What a blessing to be able to talk freely with my son about the wonders of God’s grace.
God has helped me through many tight spots, but for some reason I seem to remember them for only a short while. Well, not this time. I wrote it on my calendar, “Today God led me out of the woods”.
The Eye of the Beholder
by Elinor Young
Behold the hippopotomus! We laugh at how he looks to us. And yet, in moments dark and grim
I wonder how we look to him.
Peace, peace, thou hippopotomus! We really look all right to us. As you, no doubt, delight the eye Of other hippopotomi.
(author unknown)
That’s one of the silly poems that I memorized as a teenager. Every once in awhile I find an occasion to quote it with great flare to some bemused audience who thinks I’ve lost a few marbles.
It came to mind recently when no one was around to impress with my eloquence. This time the occasion was someone on an e-mail polio list, describing a childhood incident that so many of us can relate to. Being laughed at, called names and assumed to be sub-intelligent because of the physical aftermath of polio’s attack.
Identity. Who assigns it to us? Whose assessment do we accept?
For 17 years I lived and worked as a missionary among what we would call a “primitive” tribal culture in the interior mountains of Irian Jaya, Indonesia. The Kimyals live a subsistence life-style, making, growing or gathering everything they need for their way of life. Kimyal culture has a rich oral literature of legends and chants which paint a picture of who they believe they are.
An important part of my learning the Kimyal language and culture was to go to their huts and listen to some of these stories. One day they told me that one of their ancestors long, long ago said that some day spirit beings from another world would visit them. These visitors would have faded skin and would wear spider webs. When Phil Masters and Bruno deLeauw, the first Western men to discover the Kimyals, walked into Kimyal territory, they had white skin and wore cloth — something the Kimyals had never seen before. It looked like spider webs. The conclusion was obvious. The two men were spirit beings from another world, and must be killed before they did any harm. How that didn’t happen is another story. The point for now is, Bruno and Phil were identified by the Kimyals according to what was normal for Kimyals and what they knew to be true (“real” people don’t have pale skin).
Within a year of hearing that story, my mission organization requested that I do a language/dialect survey of the other mountain valleys where we believed Kimyals to be. There was no way for me to do that except by helicopter. Armed with great curiosity, some note cards and the Swadesh 100 word list (a linguist’s list of words and objects common to all cultures), I spent a day flying from valley to valley, landing at villages, trying to find someone from whom I could elicit a word list. Sometimes, though, the villages were empty, and no one responded to my calls to come talk.
One of the villages on the farthest fringes of Kimyal-land had never seen a white woman before. The pilot carefully chose the least muddy-looking spot to put down. This village, too, was eerily silent at first. Finally a young man appeared and began slowly walking towards me, shaking from his ears to his toes. I didn’t know the human body could quake like that. It was actually audible, like leaves rustling in a tree. The young man’s eyes were wide with fright but his face was etched with determination to overcome his fear. With some difficulty I elicited enough words to show me that his dialect was related, but very different from the dialect spoken at Korupun.
When I was finished, he pointed a quivering finger at the pilot and the helicopter and I managed to understand his question, “Are you going to stay here in your house tonight, or go back to your sky village?” He thought we were spirit beings who had come to visit. We didn’t lose any time leaving!
These two stories are pretty extreme examples of inaccurate labelling, but are more understandable than what sometimes happens in our culture. Yes, I’m thinking again of that person on the post-polio e-mail list who still bears that tinge of self-doubt because of who he was told — and is still told — he is.
How do we handle that? The eye of which beholder should we trust? Do we accept as true a social evaluation that is based on physical appearance or strength? Where can we find an accurate assessment of who we are?
Long ago I decided that if I based my identity and worth on the feedback I got from cultures or individuals, I would end up at best confused and at worst depressed and bitter. I discovered a standard higher than human evaluation. An eye that not only sees more than the human eye can, but sees with perfect accuracy. God’s. What does he say about me? He says, “But you are… a people belonging to God, that you may declare the praises of him who called you out of darkness into his wonderful light.” (1 Peter 2:9)
Now, that’s an identity I can really LIVE with!!
P.E.N. & ink Link
Dave Faulkner sent us a very warm, encouraging letter. About his late wife, Cheri, who died of cancer last year, Dave said, “Cheri went through the Elk’s Rehabilitation Center in Boise, Idaho. They gave her a lot of good (post-polio) information. I would certainly recommend them to anyone wanting to know more about the disease and how best to deal with it. At their recommendation she purchased a scooter, which was a great help in her work as a nursing secretary at Kootenai Medical Center in Coeur d’Alene.”
…..Dave now has for sale a Toyota 2-wheel drive long-bed pickup with a canopy that is equipped with Bruno lift and hand controls. He also has a Tri Rolls scooter. He would rather keep the pickup and just sell the scooter, lift and/or hand controls (very reasonably), but would certainly consider selling the whole package if anyone is interested. Call him at (208) 765-3334.
Others write:
“I truely enjoy every word of the newsletter and have found much helpful information. I worked until six years ago, and now am on disability. There is a big change in what I’m able to do now, but I thank God every day for allowing me to do what I do! I hope some day to visit your group when we are out to see our son in Idaho.” — L.
…..Yes, do! And anyone else who comes our way, we’d love to meet you!
“I would like the address of Sue Ross. I am a post-polio and enjoyed her article very much. I’d really like to meet her one day.” — M.
…..Sue was very encouraged by all the folks who called or wrote to her in response to the article in the last P.E.N. & ink. Thank you all!
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
Computer Connections
A new feature on Our Webpage, “Links – Polio People and Places on the Internet,” is a link to the archives of the new e-mail forum, “Post-Polio Med.” This e-mail list “includes, but is not limited to: questions, answers and information about post-polio syndrome research, clinical issues, clinical trials and current treatment practices.” To get to the archives, follow our link or go directly to http://maelstrom.stjohns.edu/archives/post-polio/l Click on “Search the archives” then type into the search box a topic you want information about. Or browse copies of discussions of past months. A highly recommended Website!
Magnet Therapy, A report on recent findings.
(by P.E.N. staff writers)
Have you heard about it and wondered if it is legitimate? Spurred on partly by the fact that applying magnets to areas of pain has become an increasingly popular self-help therapy of athletes, Dr. Carlos Vallbona, Ph.D of the University of Baylor College of Medicine, recently conducted a double-blind study using 50 volunteers who have post-polio syndrome.
The report of this study was published in the November, 1997 issue of Archives of Physical and Rehabilitation Medicine. It said that 76% of the patients who used an active magnet had a decrease in pain. Why some did not is uncertain, as is why some patients felt the effects on parts of the body far from where the magnets were applied. In fact, they aren’t sure why they even worked, though they have some theories that have to do with changes the magnets may produce in the body’s pain receptors.
Though other researchers warn that more studies are needed to see if these results can be duplicated and to answer questions like “How long will the effects last?” they are intrigued with what may come from this and future studies.
Experts caution that if you would like to try using magnets, until further research is done, use specialized medical magnets. These are about five times stronger than a common refrigerator magnet, and magnets from hardware stores may be too strong. You can get magnets like the ones used in the Baylor study in medical catalogs or in some sports medicine clinics.
Do you want to learn more?
– Go to http://maelstrom.stjohns.edu/CGI/wa.exe?S1=post-polio, then type “magnet” in the search box. You’ll get a list containing the published article and discussions about it.
– Send to our librarian, Darlene, for a copy of a report about the published article.
– Attend the Polio Outreach of Spokane meeting in February. The speaker, Anne Phillips, is an independent distributor of NIKKEN PRODUCTS.
BITS & PIECES
YOUR ATTENTION PLEASE
A member of Polio Outreach of Spokane passes this important information along to all of us:
The New Zealand Post-Polio Support Groups are issuing a Drug Alert Card to their members, warning them that some kinds of drugs may worsen symptoms in polio patients and should be avoided or used with caution.
These are: 1] Beta Blockers, e.g. Propranolol, Inderal, Cardinol, Deralin. 2] Benzodiazepines, e.g. Diazepam, Valium 3] other central nervous system depressants 4] general anesthetics
5] muscle relaxants, e.g. Orphendrine, Norgesic, Norflex
You should consult with your doctor about your polio history before taking these or any other drugs.
Money isn’t everything… but it sure keeps the children in touch.
Polio Outreach of Spokane Library
Your resource for information on post-polio syndrome and disability issues.
As winter is upon us, we encourage all to ‘dig’ out your copy of “Winter is Especially Hard for Survivors of Polio”. It is not new to us, but has truths we are likely to forget. Don’t let the effects of PPS make you run for ‘the covers’ until spring, but anticipate seasonal needs and look with renewed interest at YOUR list of coping skills. We do, indeed, need to take steps to conserve energy and avoid fatigue, best we can, BUT don’t forget to live your life to the fullest with whatever resources that have been given you. Look up, not down. Look out, not just in. Enjoy life!
The library has been given a packet on Social Security information that we trust will be of help to those facing the many pages of paperwork that’s involved. Understanding the criteria, the definitions being used and the documentation necessary are all included. Please look the packet over. (Many thanks to Dianne and Milo Rude for the addition!)
And one more article I ran across on one of our web site links: Medications (as listed on the Polio Survivors’ Page). It briefly describes four drugs and four modalities that have been under study for the treatment of PPS. Not the final word on these drugs, but what’s being studied as helpful. By Dr. Lauro Halstead, ’95.
Call me with your questions and needs.
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/
Thank You!
This isn’t your last one! Thank you! This was going to have to be the last issue of P.E.N. & iNk until we could find more funds. Because you responded, there will be more issues. We are very encouraged! We don’t have enough for all of 1998, though. If your good intensions got lost during the holidays, take this as a reminder. We still need YOU to maintain this and other P.E.N. services. Send your donation in the enclosed envelope or to: P.E.N. & ink, 508 S. Shoreline Dr., Liberty Lake, WA 99019, U.S.A.
Polio Experience Network provides these services:
– NEWS LETTER — P.E.N. & iNk, distributed world-wide to over 800 polio survivors and treatment professionals.
– SUPPORT GROUP — Hosting Polio Outreach of Spokane. Meets monthly, averaging 50 in attendance.
– LIBRARY — In partnership with Polio Outreach of Spokane providing a free local resource and mailing world wide. (Including many health care professionals.)
– WEBSITE — Communicating with areas of the world that still have polio and little knowledge of PPS. An invaluable resource.