Inspiration, news and knowledge from Polio Experience Network
No. 23: March/April, 1998
In This Issue:
Sharman’s News, Sharman Collins
“Do Other People Feel Like This?” by Darlene Hansen
“Thank You,” (a poem by Marian Zoesch)
ACCESS Spokane
Computer Connections
How Much Do You Know About the Fats In Your Diet?
The P.E.N. & ink LINK
Bits & Pieces: Medical Terms – Hand Controls for Rental Cars
“A Tale of Two Vaccines,” a guest column by Nancy Baldwin Carter
POS Library (by Darlene Hansen)
Sharman’s News
Spring is here! This is my favorite season.
…….I love to walk in the garden and sniff the flowers. My poodles, Bud and Gigi, wait at the front door most of the day eager to chase squirrels, birds, and butterflies. My husband, Ken, is busy planning our yard in our new home. He loves working in the garden. He won’t have as much lawn to take care of as he has for the last 28 years, but he’ll have alot of flowers. What fun!
…….Our Spring meetings will be informative and interesting.
…….On March 24, our group members will discuss suggestions for vacation travel for people with disablilities. Come prepared to share your ideas. Travel brochures featuring outdoor recreation areas in Washington state will be available.
…….At our April 28th meeting, Joan Epefanio, R.N., plans to speak to us about Mannetech products that promote cellular nutrition and repair, and proper adrenal function in the human body. She will share research information developed by scientists associated with Mannetech, Inc.
…….Meetings are at Shriners Hospital in the 5th floor auditorium at 6:00 p.m. Shriners is located at W. 911 5th Avenue in Spokane. 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 by there by 5:00 p.m.
Much love from your friend,
…..Sharman
Do Other People Feel Like This?
by Darlene Hansen
About eight years ago, less than 12 hours after having gall bladder surgery, I was asked a question which was difficult for me to answer. Perhaps it would be for you too. I had been following my attending nurse’s directions to the letter: “Get out of bed, get walking, get your plumbing working again, get off the automatic pain medication machine, etc.” My doctor happened by and saw me struggling to get back in bed. He told me to medicate myself for pain. I replied that I was no longer hooked up to their machine. Upset, he tracked down my nurse. She returned with the question: “Why didn’t you say you were in pain?”
That may seem like a logical question for some, but it wasn’t for me. In pain? That’s a relative thing. I had just undergone surgery, the most difficult surgical procedure I had ever experienced. And that was more than a couple! Why hadn’t I told her? To me it was a given that I would be feeling a bit under the weather. I asked my own question, “What is pain?” She replied with an amazing “Anything short of comfortable.”
That causes some thought. “Comfortable?” What does that mean? Able to live with the ailment? Of course. Able to continue normal activities? Of course. Able to concentrate? If I want to and I do! Strange questions they ask.
Years later I was at our friendly and informed physical therapist’s, undergoing an electrical absorption procedure. “Do you feel that yet? It will feel like a bee’s sting. No? How about now? No? I’ll go a little higher… Now? No? My goodness…” He turned his little contraption up considerably but I still barely felt what he considered “very high.” He said I’m a “tough lady.”
Recently I was back in the PT’s office again. My wrists hurt and I had some aches. My PT asked me to describe it better, “Are they numb? tingling? am I in pain?” Oh no, not that question again. I’ve been calling these symptoms “heaviness, aches, strange feeling” for a long time now. Yes, I’ve now been told several times that I have an unusually high pain threshold. “Okay, if you say so…” I can’t really comprehend what they are saying – I don’t know what others feel. I only know my own level of … “uncomfortableness.”
Today, it’s now 7:30 a.m. I’ve been baby-sitting two of my six grandchildren, one of my favorite past-times. I’m careful these days. I wear my wrist splints. I don’t pick up the children much anymore and when I do, I don’t use my wrists. I use my full forearms. So why do I ache all over? I ask myself, “Is this pain?” I make myself focus. “Neck, how are you?” Stiff and sore. “Shoulders, how are you?” Tired, ache, seem heavy, would like to fall off. “Arms, how about you?” Ache, tired, want to be elevated. “Back, how are you?” Feels crooked, aches, tired!
I guess these descriptions are what people call pain. But that’s still a foreign word to me.
So now I’m in a quandary. Do I continue to focus on each part of my body and identify my uncomfortableness? That takes quite a bit of self-concentration, and what do I do with the answers? The other choice is to vaguely acknowledge these aches and pains, make modifications, then continue to live a full life of helping where I can, doing what I can, loving people and using what opportunities God gives me. He knows this body better than I do and He also knows my limitations.
I think today I’ll use what is given me by the One who is the Giver of all good things and concentrate on that.
Editors note: As readers may know, Darlene is our P.E.N. librarian. We wanted you to know her better. Our good friend seems to give a little piece of herself to everyone she comes in contact with. Now, when you contact her for library help, you will know that she is able to empathize with you. — DG
by Miriam Zoesch
Thank you Lord. You really do care.
You really hear the hurts of your children.
Prayer does work. Prayers break down impossible obstacles. Prayer is refreshing water flowing over me.
Prayers of many have enveloped me.
When I thought no one was there, When I felt angry, When I felt discouraged,
When I hurt,
I was not alone. You have promised to be with us always. Thank you Lord.
ACCESS Spokane
…………………………………………………………..Participating organizations:
………………………………………………………………………..C.O.R.D. (Coalition of Responsible Disabled)
………………………………………………………………………..National Multiple Sclerosis Society
………………………………………………………………………..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
………………………………………………………………………..Aging and Long-term Care of Washington
Air Travel Brochure
…..Accompanying this issue of PEN & iNk is a brochure that we hope will give people with disabilities the information and confidence they need to travel.
…..Authored by Dave Graham, with help from many sources, this brochure contains information that is usefull to all of us who question our ability to compete as a customer of the travel industry.
…..We recommend you save it, making it part of your travel luggage.
…..Our special thanks go to Inland Medical and Rehab who paid for the printing.
The Americans with Disabilities Act
…..The State of Washington is presenting a workshop on the A.D.A. It is free to the public and you are invited. This should be very interesting and informative. The event will take place in Spokane on Monday, March 30th, 1998, at the Deaconess Health and Information Center, West 910 Fifth Ave. Parking is free in the garage.
…..You must call (509) 532-3149 to register.
…..The event is sponsored by ACCESS Spokane and the N.W. Disability Business and Technical Assistance Center.
Computer Connections
…..Besides our own Website there are other great polio-related Websites out there. Among the best writing you’ll find is two stories by Richard Hill.
…..Each Saving Breath is about John Prestwich, who lives just minutes from death. Paralyzed, unable even to breathe, a mechanical ventilator keeps him alive. He holds the Guinness World Record for being completely dependent on a ventilator for over 40 years. His ventilator has given him over 350 million breaths since he contracted polio on his seventeenth birthday on November 24th, 1955. To access the whole story go to www.newsplus.enta.net/jprest/.
…..Also by Richard Hill is A Being Breathing Thoughtful Breath; The History of the British Iron Lung 1832 – 1995. Fascinating! Find it at www.newsplus.enta.net/ironlung/
Weight control, we all know, is hard for bodies with weak muscles that can’t burn many calories. We are told that watching our fat intake can help, but that can be confusing.
How much do you know about the fats in your diet?
Editors Comment: Since this article is intended to offer valuable information, not be an exam, we have highlighted the correct answer to each question and in some cases added a comment.
1. While a low-fat diet is healthier for you than one high in fat, a certain amount of fat is needed by the body for proper growth and function. a) True or b) False
2. The health of which basic component of our bodies is greatly affected by the quality of the fats that we eat? a) Major arteries, b) Muscles, c) Cell membranes, d) or Skin.
3. Certain good fats–essential fatty acids (EFA’S)-get their name because they cannot be manufactured by the body in any appreciable amounts and must be provided by the diet. a) True or b) False
4. While eating too much harmful fat (saturated fats, trans-fatty acids, and partially hydrogenated polyunsaturated fatty acids) contributes to health problems, eating great quantities of good fats ( fish oil, unrefined land-vegetable oils, and algae-source docosahexanenoic acid, DHA) is not harmful. a) True or b) False; excess fat of any kind is not good.
5. Examples of omega-3 fatty acids include: fish oil (including DHA and eicosapentaenoic acid, EPA), docosapentaenoic acid (DPA), flaxseed oil, and leafy green vegetables; omega-6 sources include: most vegetable, seed, and nut oils; evening primose, black currant seed, and borage seed oils; and meat/dairy fats. a) True or b) False
6. The “mother” of the omega-3 oils is linolenic acid, which is converted in our bodies into EPA and then into DHA. a) True or b) False
7. Which factors are known to inactivate the process involved in converting EPA to DHA from such dietary sources as cold-water fish and flaxseed oil? a) Smoking, b) Environmental toxins, c) Alcohol, d) Excessive intake of saturated fat, e) all of the above.
8. DHA, one of the most important omega-3 long-chain fatty acids, is the main structural fat in the brain and retina and is an important dietary nutrient for infants. a) True; evidence supports that without DHA, infants are at a disadvantage in their mental and physical development. b) False
9. One of the primary roles EFAs play in the body is in the composition of prostaglandins, hormone-like substances that are produced and used by all cells and regulate functions of which systems of the body. a) Cardiovascular, b) Reproductive, c) Immune, d) Nervous, e) All of the above.
10. Some experts say that 30,000 deaths per year in the United States occur as a result of the consumption of which fat (found primarily in margarine and mass-market foods)? a) Vegetable oils, b) Partially hydrogenated oils and trans-fatty acids (TFA’s), consumption of which leads to high “bad” cholesterol, heart disease, and cancer, among other diseases. c) Monounsaturated fatty acids.
11. USDA guidelines recommend what percentage of total calories per day from fat? a) 40%, b) 0%, c) 50%, d) 30%.
12. Consumption of DHA has been identified to be a benefit to one’s health in reference to what conditions. a) Depression, b) ADHD, c) Alzheimer’s disease, d) Multiple sclerosis, e) Retinitis pigmentosa, f) Infants’ neurological development, g) All of the above.
13. Monounsaturated oils such as canola, peanut, avocado, and olive contain a high proportion of oleic acid, a fatty acid that can be synthesized in our bodies, and is considered to be healthful. a) True or b) False
P.E.N. & ink Link
CAN YOU HELP WITH THIS REQUEST? “I am a deaf boy and am studying polio and create(ing) a story about a person disabled by polio. … I’m 12 yrs old. I would like to have a polio disabled pen pal on AOL.” – If you would like to be a pen-pal for this boy, e-mail us and we will connect you with him.
It will be summer soon. A friend sends along this helpful information:
“I have a permanent pass to all the national parks. It is about the size of a Social Security card. I got it by filling out a questionnaire at one of their toll plazas, and had to show that my handicapped registration plate was also made out in my [or joint] name. I had to give the name of the doctor that had signed for the original registration of the handicapped plates… it is permanent since my license plate is also permanent. I can also use it, according to the back of it, if I am in another’s car, but then will have to prove my identity. Hope this helps someone.” Sally in Maine
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
BITS & PIECES
A UNIQUE DICTIONARY OF MEDICAL TERMS
Bacteria………………………………………….back door to a cafeteria
Barium……………………………………………what to do when treatment fails
Cesarean Section ……………………………a district in Rome
Cardiology ……………………………………..advanced study of poker playing
Cat Scan ………………………………………..searching for one’s lost kitty
Cauterize ……………………………………….made eye contact with her
Coma …………………………………………….punctuation mark
D & C ……………………………………………where Washington is
Dilate……………………………………………..to live long
Enema ……………………………………………not a friend
Genes …………………………………………….blue denim slacks
Hangnail………………………………………….coat hook
Herpes ……………………………………………what women do in the Ladies Room
Impotent………………………………………… distinguished, well known
Inpatient………………………………………… tired of waiting
Labor Pain……………………………………… hurt at work
Medical Staff………………………………….. a doctor’s cane
Morbid…………………………………………… a higher bid
Nitrate……………………………………………. cheaper than the day rate
Node ……………………………………………….was aware of
Outpatient ……………………………………….a person who has fainted
Paralyze …………………………………………..two far-fetched stories
Post-Operative………………………………… letter carrier
Protein …………………………………………….in favor of young people
Recovery Room ……………………………….place to upholster furniture
Rectum ……………………………………………what happened to the Corvette
Saline …………………………………………….. where you go on your boat
Secretion ………………………………………….hiding something
Terminal Illness ………………………………..getting sick at the airport
Urine ………………………………………………..opposite of You’re Out
Varicose ……………………………………………nearby
………………..
HAND CONTROLS FOR RENTAL CARS
…..If you are flying, riding a bus or taking a train somewhere and want to rent a car at your destination but need hand controls, what do you do? It may be easier to arrange than you think.
…..Cars with hand controls can be rented from Avis, Hertz, National and maybe others by now — just ask. You can even specify whether you prefer the control on the right or the left of the steering column. One friend who is experienced at doing this says, “Although these were not available on the very small cars, I’ve rented cars with hand controls all over the country.” (castelli@digital.net)
…..The hand controls are normally provided at no extra charge, but the car rental company will need advanced notice. They install the controls when needed then remove them when you return the car. Or, they have one hand-control car for a wide geographic area and need time to get it to your location.
…..Portable controls that you can take with you and install yourself are also available. If that is your best option, the only manufacturer we know of is Peddle Master. Some people feel that permanent controls are better, but the Peddle Master was designed by a disabled user, so they must work fine for most folk. You can order them, or ask for information about them from:
JUDSON ENTERPRISES INC. PO Box K – Johnstown, CO 80534
Phone 1-800-587-5212
A TALE OF TWO VACCINES By Nancy Baldwin Carter : Founder, Nebraska Polio Survivors AssociationGuest Columnist
Many people don’t realize that we have two polio vaccines. They are too young to remember when Dr. Jonas Salk conducted the first large trial of his new killed virus vaccine in April 1954, inoculating over half a million children against this dreaded disease that summer and, for the first time, giving hope to the world that there might be an end to the scourge of polio. Three years later, Dr. Albert Sabin entered the ring with his polio vaccine, made from the weakened live virus (remember those sugar cubes?).
As time passed, the Sabin live oral poliovirus vaccine (OPV) became the solution of choice, and was used exclusively in this country for many years. While the Salk inactivated poliovirus vaccine (IPV) is definitely safer (one cannot acquire the disease from an inactivated virus), it has the drawbacks of requiring multiple booster shots and being administered through often-feared needles. Sabin’s OPV is more convenient because it is given orally. In certain ways it is more effective. It offers better gastrointestinal immunity, for example. And in underdeveloped countries, especially, where the “wild” or “naturally occurring” virus still exists, its “herd effect” is quite an advantage: During the four to six weeks when OPV is active in those who have been vaccinated, people who come in close contact with the inoculated realize the effect of the vaccine and are, themselves, immunized. This is precisely how the World Health Organization, with the support of Rotary International, is methodically ridding the world of polio, country by country.
The fact that OPV can actually cause polio has troubled some people over the years. With a risk factor of 1 in 750,000 children given their first dose of OPV, the numbers are low enough that scientific types may tend to discount them. Yet, if your child or mother is one of the approximately eight persons who get polio from this weakened live virus vaccine annually, that figure is little consolation. Yes–mother. The truth is that if mother or grandma or Uncle Phil were never immunized against polio and were never exposed to the wild virus, and they change the newly-vaccinated baby’s diaper or share his spoon, for instance, each of them is at risk for getting the disease, remote though that chance may be. It happens every year.
This is one reason why the Centers for Disease Control and Prevention (CDC) issued a new poliovirus vaccine schedule about a year ago. They recommend that infants routinely be inoculated with this combination: An injection of IPV at age two months and again at four months, followed by a dose of OPV given orally between twelve and eighteen months old and another between ages four and six years. In this way, the inactivated virus vaccine offers protection from the weakened live virus inoculations. This vaccination schedule considerably cuts the chances of babies’ contracting polio from the vaccine itself. Unvaccinated adults in the household can be protected by giving the children only IPV for all four shots.
Here in the United States, we haven’t had a case of wild virus polio since 1979. We no longer have the problem of vaccinating the masses. Now all we have to do is keep the population immunized in the most effective way. And so the CDC has come up with guidelines that offer us the best of both worlds–we start with the more harmless IPV and then move on to the added benefits of OPV.
Lately we have read about the emergence of pleconaril, an antiviral drug that drug-company scientists say may be at least “moderately active against poliovirus-type 2.” Perhaps we are on the brink of finding a successful treatment for polio. This could be important news to the ever-dwindling number of those in developing countries who still come in contact with the wild virus. But surely it holds no ramification for those of us with PPS. We are beyond a “cure.” At a time when the Western Hemisphere has been free of wild virus polio since 1991, with the expectation of totally eradicating wild virus polio world-wide by the year 2000, it probably won’t affect many.
The enormous success of the inactive and oral vaccines has created a couple of generations who have never experienced a polio epidemic. They cannot imagine the terror of watching those around them caught in the grip of this devastating disease, while they pray this destructive curse will not visit their household. If they are not close to polio survivors, they cannot possibly appreciate the toll paid by many of polio’s casualties–the physical damage, the lifetime of repercussions. We can rejoice that they have never had to learn these lessons. But we must hope that they understand the issue well enough without them to immunize their children.
____________________
Technical information regarding polio vaccines furnished by CDC epidemiologist D. Rebecca Prevots, Ph.D., MPH.
Polio Outreach of Spokane Library
Your resource for information on post-polio syndrome and disability issues.
Your librarian has spent hours on the computer at many web-sites, looking for updated material. Here are a few new articles.
What you should know about your medications: A guide for PolioSurvivors, by Walker & Whelan, 1996. We with post-polio are at greater risk for having interactions and complications with drugs. This paper will start us on a path to knowledge and understanding.
Pain Relief: Some tips from the collected wisdom of the Internet Polio Mail List, assembled by Tom Walter. Numerous tips given by those who have been there. Good overview; saves much trial-and-error.
Excerpts from the Journal of Chronic Fatigue Syndrome, 1997 by Richard L. Bruno, Ph.D – This would be a good article to share with a physician who isn’t clear about the distinction between PPS and CFS.
Dr. Henry Holland writes about Sister Kenny: Polio Pioneer. Did you know that her treatment was inspired by her observations of the aboriginals of Australia? That her title was not due to her religion, but is the title for a nurse in Australia?
Sources for Ordering Adaptive Equipment, home modifictions, travel and recreation. Addresses and 800 phone numbers.
Terminology by Tom Walter. He combines and points out the differences in terminology we may read in various articles and helps us to find the common denominator. He quotes Perry, Halstead, Cashman, Bruno & Frick and compares terms with those used by the Social Security Administration in its Medical Evaluation Manual.
Do you have a specific post polio issue you would like us to research for you? Give me a call.
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/