Inspiration, news and knowledge from Polio Experience Network
No. 17: March/April, 1997
In This Issue:
Sharman’s News, Sharman Collins
“Asabing’s Legacy,” Elinor Young
Linda to Retire
“Identity and the Disabled Perspective,” Dave Graham
“Preparation for Polio Survivors Undergoing Dental Procedures,” Dr. Richard Bruno
Thank You – Subscription Form
“Sound Bytes from a Pharmacologist,” by Linda Scott
P.O.S. Library
Sharman’s News
…..It’s almost Spring! Ice storms, power outages, snow and more snow left lasting memories of the winter of 1996-97. I am certain everyone is looking forward to Spring sunshine and flowers.
…..Shriners Hospital has agreed to our request for use of the auditorium on the fourth Tuesday of every month through 1997. There should be no more scheduling changes! We sincerely appreciate their generosity. Thank you for your patience over the last several months.
…..On March 25, Bob Paull, P.T., will be our guest speaker. One of our most popular speakers, Bob has a wealth of knowledge about post-polio syndrome. Proper body positioning for efficient movement will be his topic.
…..Dr. Brent Hoekema, who lives with his wife and two sons in Lynden, Washington, will be our guest on April 22. Brent was originally scheduled to speak to our group in January, but due to snow in the pass, had to cancel the engagement. We are looking forward to sharing some time with Brent. Disabled with post-polio syndrome, Brent retired from his career as a chiropractor in 1991. He has much to share with us about different coping skills he has developed to adjust to his disability.
…..In May, we will have a group discussion dealing with accessibility issues. I hope to see you at all of these meetings. We meet 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 cafeteria, please by there by 5:00 p.m.
Much love from your friend,
Sharman
Asabing‘s Legacy
By Elinor Young
Asabing has been in my thoughts a lot lately. I’m not sure why. Maybe it’s the days and days of gloomy weather we’ve had. Grey overcast sky, lots of fog and the moody blahs. This is how it was when Asabing died. Well, actually, he was murdered.
I guess it’s not surprising, then, that these cold, grey days would bring thoughts of Asabing. But more than just thinking of his death, I think of his life. He was a great guy.
Asabing was a Kimyal, one of the tribal people I lived and worked among as a missionary in the mountainous interior valley of Korupun, Irian Jaya, Indonesia. The Kimyals are a semi-pygmy group of people, averaging under 4’11” in height. But they were fierce and ruthless. The neighboring Yalis, though bigger and stronger, were afraid of them. At war, Kimyals were like little fire-ants.
That didn’t describe Asabing, though. Yes, he was small – at 4’6″, smaller than the average. But there wasn’t a drop of fierceness in his blood. He was the most gentle man I’ve ever met, except my dad. He reminded me of my dad in other ways, too. He loved growing things. Every Kimyal grows a garden for daily food, but few consider it pleasureable. It would correspond to grocery shopping in our culture – something done out of necessity. Asabing was my gardener, and took chest-swelling pride in “our” yard. Other Kimyals would point to a flower and ask, “Can you eat that? No? Then what do you do with it?” Learning that I just look it at, my questioner would walk off laughing to himself. Asabing, though, delighted in those flowers, and did not think them silliness at all. His eyes sparkled at the beauty he created in my (oops! “our”) yard. Asabing also had a very loyal, generous heart. He would risk anything for a friend. In fact, he did.
For three months our Korupun grass-and-gravel airstrip was shut down while we did some major work on it, removing a four-foot deep “bounder” at the touch-down area. Without machines, using just muscle power, the project was a major task. Being shut down meant that the only way we had of sending or receiving mail was to send it eight hours over a high mountain pass to the airstrip at Sela when they were expecting a plane. Even the courier’s pay was not always enough to entice someone to go. One day, after being without mail for an especially long time and not being able to find anyone willing do a mail run to Sela, I asked Asabing if he would go. If he hesitated, it wasn’t enough for me to notice. Pulling back his shoulders and flashing a smile, he said, “Sure.”
I didn’t realize what I was asking of him. My biggest concern what that it was awfully cold and wet up there on the top of the 10,000 foot pass. Even at our 6,000 foot elevation I needed a jacket outdoors. All Asabing ever wore was the traditional Kimyal men’s clothing, a gourd penis sheath. Between me and Jessie, my colleague at Korupun, Asabing was outfitted with a sweater or sweatshirt and some long plastic rain gear. We put the mailbags inside a large plastic bag, gave him some food to eat on the way, and he trotted off. But exposure wasn’t the real enemy. Asabing was of the Mirin clan. It wasn’t until later that I found out that two Sela men had been trying for weeks to ambush any lone Mirin they could find on the trail and kill him in revenge for a perceived wrong.
A Sela man whose name translates as “Ant-Man” and his brother whose name I don’t remember, except that it was a double name like “Bon-bon,” so I’ll call him that for now, had a sister who had married a Mirin from Korupun. Despite their demands and threats, they had never been paid the customary dowry of pigs. The sister disallowed that, saying “Why should they be paid for me when they killed my first husband and never paid me for that?” Good point, but Ant-Man and Bon-Bon weren’t thinking of fair; they just wanted the goods. So, they said, “If we don’t get pigs, we’ll get a man.” Ant-man and Bon-Bon were bigger and stronger than the average; their threats were taken seriously. Siud and Bogso were closer relatives to the Mirin brother-in-law, but each of them had been traveling with groups on recent trips. Threats like this are never secret in Kimyal-land. Asabing must have known the danger, but risked it for a friend.
When Asabing did not return the next day or the next, a search party was sent out. They found nothing, which they knew meant the worst. If Asabing had gotten sick or had accidentally hurt himself and needed to rest on the trail, he would have put his gourd at the spot where he left the trail to find shelter, so someone could find him. There were no such markings on the trail. Finally, on the fourth day searchers found his body way off the trail in a little ravine, brutally beaten with an axe. Our in-coming mail was still with him. I cried not only at the loss of my gentle friend and the violent way he died, but also at the fact that his loyalty and generosity over something relatively superficial had led him to that death. It was all so unjust.
If you are a long-time reader of P.E.N. & ink, you know that I don’t usually write such depressing stuff. So why am I telling this story? Well, as I said, I have been thinking about Asabing a lot lately. Not morbidly, but with great warmth in my heart for such a friend.
The Bible says, “Greater love has no man than this: that a man would lay down his life for his friend.” Asabing literally did that, and so needlessly. Thinking about him, I began to survey my life and all the friends God has blessed me with. Friends, including relatives, who in other ways have “laid down their lives” for me. It was because they extended themselves beyond what would be expected that I was enabled to make the absolute most out of the strength polio left me with. My first school-bus driver who every day lifted me into the bus with a “Good morning, Sunshine,” that made me feel special. Friends who later carried my books and cornet between classes and up and down stairs. Brothers who pulled me on sleds or rode me on their bikes 1/4 mile to the bus stop for 12 years. Friends without whose help I could never have had those 17 wonderful years in Irian Jaya. When post-polio brought me back from Irian, my friends were an absolute necessity to my ability not only to readjust to life as an American but also to begin to get a grip on a workable management program for this disease. Friends and family are still a needed part of what is keeping me as strong and active as I am now, able in turn to give help to yet others.
No, thinking about Asabing isn’t a morbid exercise. It certainly is humbling, though. It causes me to recognize how greatly God has blessed me and it motivates me to pass that blessing along, with great joy. So, though Asabing’s death was senseless and was so very unjust, it need not be wasted. It is a wonderful legacy as I let Asabing’s example of generous friendship lead me to recognize how much God has blessed me with others’ love and share that wealth. You want to join me?
Linda to Retire as Librarian
…..Linda Scott has spent years as our librarian and now needs to retire from that position. As editor, I enjoy a special opportunity to publicly convey appreciation for the hundreds of people that she has helped.
…..Linda has maintained a special awareness of the needs of people around her. With her knowledge of resource material she has been able to bring together the person and the materials to affect positive changes in their lives.
…..I am one person whom she has helped, speaking for hundreds more, when I say a heart felt “thank you” for years of faithful service.
…..As time and situation allow, Linda will continue to submit articles for publication. In this issue see her “Sound Bytes” report.
–Dave Graham
Identity and the Disabled Perspective
by Dave Graham
In the bitter cold weather I walked to my van which was parked close by, in the area reserved for disabled people. Just then a small group of people passed by me, walking in from the outer lot. Immediately I felt guilty about my parking advantage so I began to limp more than usual as if to justify or demonstrate to these people that I really did deserve the preferential treatment.
As I went through the check-out counter at the local super-market, the clerk bagged my two sacks of groceries and left them for me to carry. An able-bodied person could easily carry twice as much. I was saddled with a decision. Do I struggle with the two bags in an effort to look normal or do I interrupt the clerk and ask for a basket?
The third day of every month, as I collect my Social Security disability check, I rehash my mind’s scheme of justifying the money. “Didn’t I work and pay my way? Every month wasn’t there a F.I.C.A. deduction in my pay check?” I rhetorically contemplate.
I plucked these three instances from my vast library of experiences that make up my disabled perspective. I suppose an able-bodied person reading them would have a hard time understanding just how compromising such occurrences are to my manhood.
There was a time that such mind-games would drive me into depression. With the passage of time and an appreciation of a much bigger picture, I have learned to view them as mild annoyances.
Regularly I feel certain pressure to perform polite gestures for a lady. You know the ones: opening a door, carrying packages, offering my arm of escort.
Far more than these niceties, I feel pressured to comply to the demanding rules of our culture, the rules of the road, rules of business, the rules of sport, rules of etiquette – – all designed around the able bodied.
The reality, however, is that my physical ability to open a door for a lady or to comply with other physical demands of society does not make me any less a gentleman.
People often take their very identity from the things they do, their work, their successes or awards, their material achievements. Our culture has created a world of competition. It was here that I too competed.
Living life as a polio survivor, my body put certain limits on me. But I just pushed a bit harder, cut a few corners, and made a few adjustments – – all to compete in this world of the able-bodied.
I actually had myself believing I was just like the next guy. My identity seemed to be formed in the way I could compete in the rigors of citizenship, striving to be a successful man.
When post-polio syndrome hit, my ability to fit the cultural mold vanished. My identity became threatened, so it caused me to dig down inside. In my earliest memories, I found a morsel of truth, a reality that was initiated and nurtured in my childhood Sunday-school. God loves me and offers me His strength and comfort in my time of need.
I returned to my Bible and found a truth that helped me to see an eternal perspective.
Physical reminders of my disability still bother me. God never said that life on this temporary earth would be easy, but He did guarantee to walk beside me.
If the Creator of the universe took the time to put me here, then He cares about me, and my identity resides in Him.
PRE-OPERATIVE PREPARATION for POLIO SURVIVORS UNDERGOING DENTAL PROCEDURES
Exerpted from an article by Richard L. Bruno, Ph.D. (Contact P.E.N. & ink if you wish to obtain the whole article which expands this topic and also includes post-op, recovery and pain control issues.) —
The pre-operative period is the most important, since it is when polio survivors must establish communication with their dentist or oral surgeon. Patients must meet with the dentist (and anesthesiologist, if one will be involved) to discuss in detail patients’ complete polio and general medical histories and the problems that may arise before, during and after the procedure.
Breathing and Swallowing.
We recommend that all polio survivors have pulmonary function studies before surgery, especially if a gaseous anesthetic will be used.1 This is vital for those who had bulbar polio. Even patients who have (or had) neck, arm or chest muscle weakness or have swallowing problems should have their lung function tested, since even these individuals may have difficulty breathing or clearing secretions (swallowing saliva) during or after the procedure.
Polio survivors with a lung capacity below 70% may need respiratory therapy or even a respirator after surgery if a gaseous anesthetic was used.2 Of course, polio survivors who use a respirator during the day or at night must discuss their respirator use in detail with their dentist, anesthesiologist, and their own pulmonologist before any surgery.1
It should also be noted that breathing and swallowing can be compromised in those who had bulbar polio or chest wall paralysis, not only by anesthetics, but also merely by reclining in the dental chair. Polio survivors often have difficulty breathing or swallowing saliva when reclining. A comfortable reclined position must be identified before the procedure begins.
And the procedure may need to be interrupted frequently to allow the patient to breath fully and to swallow. Also, a number of polio survivors have experienced severe neck or back pain following lengthy procedures, since their muscles spasm easily when placed in unusual or awkward positions, including hyperextension (extreme bending backward) of the neck.
General Anesthetics.
Polio survivors are exquisitely sensitive to anesthetic. A little anesthetic goes a long way and lasts for a long time.[3,4]
For example, the pre-operative medication used to “calm” patients – often a combination of Valium and Demerol – may by itself put polio survivors to sleep for 8 hours. Such excessive and prolonged sedation can also occur when I.V. Valium is used alone. Add to a pre-operative “calming cocktail” an intravenous anesthetic (like sodium pentothol) or a gaseous anesthetic, and polio survivors have been known to sleep for several days.
In addition, polio survivors with respiratory problems may have trouble clearing gaseous anesthetics. A number of our patients have awakened from anesthesia on a respirator in I.C.U. to the frightened faces of their family, surgeon and anesthesiologist several days after surgery.
Polio survivors need the typical dose of general anesthetic divided by 2.
This does not mean that a given polio survivor might require less than 1/2 the typical anesthetic dose, or that another won’t need more anesthetic. As always, the dose of anesthetic must be individually adjusted (for body weight, lipid space, etc.) and be adequate to keep patients under during surgery but not cause them to sleep for a week.
Unfortunately, polio survivors also have problems with local anesthetics. While polio survivors are more sensitive to general anesthesia, they seem to require more local anesthetic.
Polio survivors need 2 times the typical dose of local anesthetic.
However, the injection of a local anesthetic can result in both pain-conducting and motor nerves being anesthetized. Polio survivors are very sensitive to anything that further impairs their poliovirus-damaged motor neurons, and a local anesthetic may cause facial, tongue and pharyngial (throat) muscles to be paralyzed for many hours, impairing swallowing and breathing, especially in those who use accessory (shoulder and upper chest) muscles to assist their diaphragm in breathing.
Also, polio survivors sometimes have adverse reactions – e.g., tachycardia, panic attacks – to the epinephrine that is typically included with the local anesthetic to cause vasoconstriction (narrowing of blood vessels) to prevent the spread of the anesthetic. If additional doses of local anesthetic are required, a preparation without epinephrine may be advisable.
CONCLUSION
All of the “Rules of 2” are suggestions for polio survivors, the dentist and oral surgeon; they are not intended as substitutes for specific information about the individual patient, communication between doctor and patient, and clinical judgment All polio survivors must be evaluated and managed according to their individual needs.
—–
REFERENCES 1) Bach JR, Alba AS. Pulmonary dysfunction and sleep disorder breathing as post-polio sequelae: Evaluation and management. Orthopedics, 1991; 14: 1329-1337. 2) Bruno RL. Ultimate burnout: Post-polio sequelae basics. New Mobility, 1996; 7: 50-59 3) Bodian D. Histopathological basis of clinical findings in poliomyelitis. Am J Med. 1949; 6: 563-578.
4) Bruno RL, Frick NM, Cohen J. Polioencephalitis, stress and the etiology of Post-Polio Sequelae. Orthopedics, 1991; 14: 1269 – 1276.
Dr. Bruno is Director of Post-Polio Rehabilitation and Research Service – Kessler Institute for Rehabilitation – Saddle Brook. Associate Professor, Clinical Physical Medicine and Rehabilitation New Jersey Medical School / UMDNJ – Chairperson, International Post-Polio Task Force.
Thank you!
…..Many of you have told us how much you enjoy the P.E.N. & ink. That feed-back is very encouraging to us. You may know that up until now the all-volunteer staff and a few other friends have financed this publication through local fund-raisers. We, like you, are PPSers, and we are sorry, but the major fund-raiser has to be dropped from our can-do list. That means that we have to ask you who are able, to take up the slack.
…..We are not requiring a subscription for P.E.N. & ink, just asking for a donation if you can give one. If you are unable to donate, that’s OK, we don’t want you to miss out! We’ll keep sending you the newsletter as long as we have funds to do so. In any case, whether you can donate or not, please fill in and mail this form to: Polio Experience Network – 508 Shoreline Drive – Liberty Lake, WA 99019 Name _____________________________Address_______________________________Zip___________
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Sound bytes from the November 1996 meeting of Polio Outreach of Spokane. The speaker was Sue Lienhard, Pharmacologist, as recorded by Linda Scott. Linda’s comments shown in italics.
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“There is some thought that chronic pain (rather than acute pain) is transmitted through a different set of fibers, the ‘C’ unmyelinated fibers that transmit a little more slowly. Because it travels more slowly it is thought that the nerve transmission can become hyper-reactive, that pain becomes chronic and starts a viscious cycle, very difficult to stop, difficult to find drugs that affect that pathway.”
“Another problem: pain is subjective. If I gave everyone in this room a pain stimulus, all of you would rate it differently because each person is different. It becomes our responsibility as a patient to effectively communicate the pain to our care giver.”
“Women tend to report pain more and are medicated less.”
“Some people are fearful of reporting pain because they think they will be labled a ‘difficult patient’ or a complainer. We must communicate in distinct terms to our provider.”
“Drug therapy is only a small part of pain management.”
“Other drugs that are not usually used for pain include Tricyclic anti-depressants. Those agents seem to have some effect on the way that impulse (pain) is transmitted and can be effective for neurogenic pain, taking a while to work.” Many PPs have taken or are using either Doxepin or Trazodone successfully.
“Respiratory depression is a problem with narcotic agents, (prescription medications).” Also, can cause urinary retention.”
“Don’t mix NSAIDs (example: Aleve, Motrin, Advil) with aspirin. And don’t take them if you are truly allergic to aspirin. Both NSAIDs and aspirin can irritate the stomach and should not be taken by people with ulcers.” Sue said, “The elderly should take NSAIDs knowing that they are more subject to gastrointestinal problems and could have a negative reaction. One allergic reaction to aspirin would be difficulty in breathing.”
“A lot of people do not use the word allergy in the true sence of the word. Many just have an intolerance. Nausea is an intolerance as opposed to difficulty in breathing which is a drug allergy. If you say you have an allergy and that goes on your chart, you may not receive a drug in the same class which may be helpful to you”. It is best to discuss your drug reaction with the medical professional weighing the benefits with the possible side-effects.
“There is a great patient variability in taking NSAIDs. Relafen has made an attempt to reduce stomach problems. Certain physical conditions make you more likely to respond to a specific NSAID.” If you’ve tried Advil, for example, and it didn’t help you, try a different one. Many PP’s report that Aleve works well for them.
“Toradol is an NSAID. Many people forget that, and physicians forget to watch for NSAID side effects.” Toradol is available in injection form and frequently used after surgery. One side-effect is acute renal [kidney] failure.
Polio Outreach of Spokane Library
Your resource for information on post-polio syndrome and disability issues.
The library is maintained and a mailing service is provided by the members of Polio Outreach of Spokane. POS is one of twelve support groups under the umbrella of Polio Outreach of Washington a non-profit charity, 501(c)(3) #956317021. The state organization also maintains a fine resource library and provides a free packet of basic information. Contact PO Box 8235 – Lacey, WA 98509-8235 or call 1-800-609-5538.
We have many excellent and informative articles about post-polio syndrome in our library. Here is a brief review of five of my favorites! — Sharman Collins
– “A Ten-Year Experience,” by Stanley K. Yarnell, M.D., Saint Mary’s Hospital Post-Polio Clinic, San Franciso, CA., 1991. This great article gives an overview of the effects of the polio virus and deals with the causes of pps and the symptoms.
– “Gastrointestinal Involvement in the Post-Polio Syndrome,” by Sinn Anuras, M.D., Terri Bozeman, R.N., Department of Internal Medicine at Texas Tech University, Health Sciences Center, Lubbock, Texas. Interesting information about possible gastrointestinal problems.
– “The Worsening Respiratory Effects for Post-Polio Survivors,” by John Back, M.D., Vice Chairman, University of Medicine and Dentistry of New Jersey, 1993. Symptoms of respiratory difficulties are dealt with in detail–must reading for all polio survivors.
– “An Approach to the Patient with Suspected Post-Polio Syndrome,” Originally written by the Medical Advisory Board of Easter Seals of Oregon, updated and revised by the Medical Advisory Board of Easter Seals of Washington, 1995. An excellent overview of post-polio syndrome designed to give to your physicians. However, I feel this is necessary reading for all of us–one of the best available!
– “Post-Polio Syndrome: Finally Getting a Break?” By Marie McCarren, Spinal Network Extra, reporting on the work done by Ed Snapp of Futures Unlimited, Inc., in Columbus, M.S., 1992. This article details the experiences of several clients who were treated by Ed Snapp. Very encouraging information for all us with pps!
This is a sampling of the library resource material. A library guide is available for the asking. Please direct all requests to Darlene Hansen.