Inspiration, news and knowledge from Polio Experience Network No. 11
March /April, 1996
WHAT’S INSIDE this issue of PEN & Ink?
So you think you don’t need a support group….
“A hijacker waved a gun around Captain Testrakes head….”
And God Said No
Linda’s Library
Are you having problems breathing…. how about sleeping?
Computer Connection and other good stuff
Editors note: This came to us as a hand-written letter from Faye. When she sent it, she meant it only to be an encouragement to the P&I staff. We asked if we could print it for all of you because it expresses feelings that we all can identify with, and expresses very well some important “we’re in this together” principles.
Please, would you write to us, too? For your sake. Faye said that recording her feelings while they were fresh was so very important; several weeks later she would have denied she felt those things if she had not written them down. It was good for her to look back and remember. Expressing your thoughts on paper does you good and does us good (we can all use encouragement!).
If we want to print what you send, we will, of course, ask your permission first. But that is not the primary objective. We need each other’s support.
What The Post-Polio Support Group Means To Us
By Faye VanPatter
On August 10,1950 I was admitted to St. Elizabeth hospital in Yakima, Washington with acute bulbar and spinal poliomyelitis. I was sixteen years old. Since, with God’s healing and some strong will power I have been able to live a full and active life.
I was diagnosed with post-polio syndrome three years ago. I had some difficulty in accepting the changes that were needed so I could function with the least amount of pain and loss of energy. That involved leaving my job and reducing my activities.
I joined our local support group. At the monthly meetings I found myself slowly accepting these changes and limitations. I was so impressed with the cheerful spirit of the people. They made me feel so welcome. I was in the stage of denial, but the group gave me the love, guidance and knowledge I so needed. My husband Buzz has regularly attended meetings with me, receiving the unique needs of the spouses of a polio survivor.
On December 17, 1995, Buzz was admitted to Sacred Heart Hospital with his second heart attack. During his hospital stay I felt the need to share our situation with our PPS friends. I phoned the most caring person in the world, Elinor Young. She informed the group by our computer network and offered her prayers and love. The next day Buzz received some visitors from the group. Since then he has expressed several times how meaningful those acts of thoughtfulness were to him. Mistakenly, he had felt the support group was only for the polio survivor, not for the family and friends. We both know now how very important it is that all people attending the meetings need our love and support, as post-polio syndrome has changed all of our lives.
As I am writing this letter I am reflecting on the past month. While Buzz was hospitalized, I would receive comments like, “Faye how are you doing?” I felt so unworthy of these concerns with Buzz so ill. In fact, I really need these comments to take good care of myself. Only fellow polio survivors know the guilt we can pile on ourselves when loss of energy and pain forces us to “hit the wall”. PPS does not go away when we need our strength for family situations such as illness or even the fun times.
Several months ago I shared with our group that we have always held our family Christmas Eve celebration at our house. It has been very important to me. I have continued this event even though it involves around thirty family members. This year however, our children and sisters took charge. The evening was great, but it was not at my house. I have to admit, I shed a few tears at having to accept again this limitation of my strength and endurance. Like we discussed in our meetings, give up the activities but hold tightly to our relationships.
Buzz and I no longer relate to our PPS friends as our support group. They are our support family.
In A Time Of Need
by Elinor Young
I saw him on ABC news tonight. Captain John Testrake leaning out of the window of his TWA jet talking to reporters while a hijacker waved a gun out the window and around Capt. Testrake’s head. Pictures that mesmerized the world some years ago. Pictures of a man who died of cancer today, February 6, 1996. I didn’t see those pictures when the rest of the world did.
Hundreds of miles from a TV set I was at Korupun, a small valley tucked into the Snow Mountain range of Irian Jaya, Indonesia. The people at Korupun, the Kimyals, knew nothing of world politics. Their world revolved around raising their pigs, growing their sweet potatoes and gathering firewood and the materials needed to build their thatch-roofed huts. They had bows and arrows, not guns.
I followed the news of the hijacking by short-wave radio, listening to the Voice of America and the BBC World Service.
But when I saw Capt. Testrake on the TV screen tonight, it wasn’t the mem-ories of the hijacking that those images invoked. My memories of him are much more personal of a few days five and a half years ago. The news story mentioned that after his retirement, John Testrake identified himself with a Christian flying service helping people all over the world. That was the John Testrake I remember.
My memories of John take place at Korupun. John Testrake and his wife Phyllis were in Irian Jaya as part of a tour they were doing for Mission Aviation Fellowship, seeing first hand MAF’s work so they could better describe it to MAF’s friends and supporters. MAF asked me if Testrakes could come to Korupun for a few days to see what a truely remote place was like, and experience what a life-line MAF was to us. I was delighted to have them come.
For nearly a month I had been taking care of the 12-year old trip let daughters of friends, while the girls’ parents were in Java brushing up on their Indonesian. These were not doll and tea-party girls. Oh, no. Even taking them on two-hour hikes around the mountains didn’t use up all their energy. Testrakes came toward the end of the month; I was glad not only to see them, but also to have another diversion for the girls. My missionary colleague, a nurse, Jessie, was on vacation, so I was handling the girls on my own steam. Which was losing more and more of it’s heat by the day.
Karen, Kristine and Kelsie were delighted to help organize a pig feast for the Testrakes, and to take them around the valley, showing them the sights of the villages, rivers, waterfalls and mountain paths. I was glad they had someone else to go with!
In just a week the girls would leave for home on the north coast. Then I could rest. Why was I so tired? Sure, they were active girls, but I used to be able to handle that kind of activity and more. What was wrong with me?
Testrakes came on Wednesday, and were supposed to leave on Friday. But we were fogged in. Same on Saturday. MAF only does emergency flights on Sundays, so they would have to wait until Monday for their flight out – and hope weather allowed it.
Actually, it was the Lord, not the weather, which kept them there. After all of our hikes on the mountains, when I would silently pray that none of the girls would fall down a cliff and break something, it happened in my yard. At dusk Saturday, Karen was doing cart-wheels on the grass, landed wrong, and broke a leg. I heard it pop. I immediately sent out a call for Sabbil, the clinic worker Jessie had just trained in the setting of bones, and sent a note up to Jessie’s house at the top of the airstrip, where Testrakes were staying. Could John please come down and help us with Karen? Sabbil, John and Semia, the local pastor, all arrived. Sabbil confirmed that Karen’s leg was broken. He told me he’d make a splint – would John help? Sabbil measured Karen’s leg, then the guys went off to make a box-like splint. Phyllis cooked supper. I couldn’t handle that now.
I got on the communications radio and contacted a missionary doctor. All I could do was try to keep Karen comfortable for the night and call MAF as soon as it got light in the morning. Karen would have to be flown to a mission hospital at Mulia, a couple hundred miles away. Dr. Buce and his wife Janet would be happy to keep Karen in their home after he cast her leg. Karen knew and liked Buce and Janet. Karen would be fine and well cared for. Kelsie, Kristine and I would follow our original plan to fly out to Sentani on Wednesday. But I felt responsible; the girls were in my care. I really ought to stay with Karen; all of us should fly to Mulia in the morning. But I was exhausted; I knew I could not stay up half the night getting myself and the girls packed and ready. I just couldn’t do it. Why not? Last year I could have handled it. What was wrong with me? Why was I being so irresponsible? Why couldn’t I do it?
John Testrake was wonderful. I suppose next to the stress of the hijacking, this was small peanuts. But this time he wasn’t captain, and didn’t try to be. Sabbil, a simple village man who didn’t even have a grade-school education was in charge, and John followed his instructions. With respect. They brought the finished splint in, and John and Semia held Karen while Sabbil pulled her leg to line the bone up and bind it into the splint. John, the airline captain, a man who had seen the world and whose courage had been supremely tested, was impressed. He treated Sabbil like the equal he was in his world.
Karen was in great pain through the night. Kristine, Kelsie and I didn’t get much sleep, either.
In the morning I called MAF and told them of our emergency. The fog was gone, the sun was shining and there was no wind. Perfect for the plane to come in. An MAF pilot’s wife who is a nurse came along to take care of Karen during the 2-hour flight. Her sisters cried. We waved goodby and fell silent as the plane lifted off our little grass and gravel airstrip.
Later that day Dr. Buce told me Sabbil had done a perfect job. The x-ray showed the bone was lined up perfectly. He didn’t have to set it further, just cast it. It was so good to have the Testrakes there to share my relief, and to comfort me.
But the guilty questions still echoed in my head. Over and over every day and even on the flight to Sentani on Wednesday. “Why couldn’t I have gone with Karen? What was wrong with me?”
A year later I was the one with legs in great pain. I couldn’t walk without crutches now, and was being flown back to the States for medical evaluation. A year after that I was well practiced in a scooter and was using a free-swinging arm support to hold my arm to brush my teeth and put on my make-up.
Now I knew what had been wrong with me. I had post-polio syndrome, and was weakening fast.
The memory tonight’s news piece brought to my mind is not of a hijacking, but of a couple the Lord sent along to help me in a situation I did not have the strength to handle alone, and didn’t know why. Part of it is melancholy, but part makes me smile – the part about how God knew and provided. And still does.
AND GOD SAID, “NO”
I asked God to take away my pride and God said, “No.”
He said it was not for Him to take away but for me to give up.
I asked God to make my handicapped body whole and God said, “No.”
He said the body is only temporary.
I asked God to grant me patience and God said, “No.”
He said patience is a by-product of tribulation. It isn’t granted, it’s earned.
I asked God to give me happiness and God said, “No.”
He said He gives His blessings. Happiness is up to me.
I asked God to spare me from pain and God said, “No.”
He said suffering draws you apart from worldly cares and brings you closer to Him.
I asked God to make my spirit grow and God said, “No.”
He said I must grow on my own, but He will prune me to make me fruitful.
I asked God if He loved me and God said, “Yes.”
He gave His only Son who died for me and I will be in heaven someday because I believe.
I asked God to help me love others as much as He loves me and God said,
“AH, FINALLY YOU HAVE THE IDEA.”
Author Unknown
Linda’s Library
A unique and valuable resource for anyone interested in post-polio syndrome.
from Linda Scott
PLEASE NOTE
The Polio Outreach Library has more than tripled in size in the last four years. When you attend a monthly meeting, the library is laid out for you to review. The library is yours. I’m just the caretaker. Let me know what you want to read, listen to or watch. Since the library has grown, I need to make changes. Please call me with your interests and suggestions.
Contact Linda by writing to 1320 N. Hollis
Spokane, WA 99201-3012
NEW IN THE LIBRARY NEW MOBILITY MAGAZINE Jan/Feb ’96 issues For a one year subscription, send a check for $27.95 to: NEW MOBILITY PO Box 15518
N. Hollywood, CA 91615-9773
1996 Polio Yearbook of ‘ONLY THE FACTS’ For your own copy, send a check for $10.00 to: NY Post Polio Support Group PO Box 182
Howard Beach, NY 11414
HANDOUT BY MAIL
CARPEL TUNNEL SYNDROME, courtesy of National Organization for Rare Disorders. Many PP’s have reported having this wrist disorder, whether they have done repetitive activities or not.
Articles that have been listed in past issues continue to be available.
Magazine Review
by Sylvia Smith
NEW MOBILITY is a magazine devoted to disability lifestyle, culture and resources. Says so, right on the cover!
This magazine for disAblers, contains in-depth coverage of issues related to post-polio as well as spinal cord injuries, MS and disability issues in general. Their attitude is “tell-it-like-it-is”. There is something for everyone, including politics, humor and information on the Atlanta Paralympics. For example: in the January 1996 issue, there is a very thought provoking article by James Baylor in which he states that “we identify ourselves as a group, as the disabled” and he goes on to ask whether we want society to accommodate us or to include us. Baylor notes that the ADA was designed to accommodate rather than to include. For action buffs there is an article on paintball and becoming an equal opportunity target! Van lifts and ramps are considered along with winter destinations, marriage, family and romance. It’s a good read, feel good magazine, highlighting the strengths of people with disAbilities. It is chuck full of ways to bring more enjoyment and pleasure into your life.
Thank you Hatch Family…
Barbara Hatch, one of our Polio Outreach of Spokane members, lost her husband Maury in January. In the newspaper notice of his death, the family asked that memorial contributions be sent to us. We were deeply touched by this indication of love and support for their mother (indeed, a very precious lady) and want to publicly thank them for that.
We also want to thank the Hatch family that even at this sad time they wanted to reach out to other survivors of polio. Sadly, the difficulties of many of our post-polio friends are compounded by people who find it difficult to acknowledge the newly debilitating effects of this disease. It warms our hearts to see that this family cares and wants to help. The response to the Maury Hatch Memorial was very generous.
To Barbara’s family we say “thank you.”
POST-POLIO BREATHING AND SLEEP PROBLEMS
By Judith R. Fischer and Joan L. Headley, International Polio Network
New breathing and sleep problems in aging polio survivors can be insidious and often not recognized by either polio survivors themselves or health care professionals. Polio survivors who were in an iron lung or barely escaped one during the acute phase should be aware of potential problems and educate them-selves in order to avoid acute respiratory failure. Polio survivors who did not need ventilatory assistance during the acute phase may also be at risk for respiratory failure and should likewise be aware of problems with breathing and sleep.
Simply stated, the major problem for polio survivors is hypoventilation (commonly ref. to as underventilation). Not enough air reaches the lungs, producing an imbalance in the gas exchange in the blood: too little oxygen, too much carbon dioxide (CO2) or hypercapnia. Hypoventilation is caused by one or a combination of the following: chest wall deformities such as scoliosis, respiratory muscle weakness due to the poliomyelitis, and sleep apnea (an interruption of breathing during sleep) which can be central obstructive, or mixed, and occurs in the general population as well.
Other factors contributing to a polio survivor’s problems are a history of smoking, obesity, lung disease, and diminished vital capacity (VC). As aging occurs in anyone, vital capacity (VC) diminishes, but this decrease in VC is more serious in an aging polio survivor with limited musculature remaining to produce adequate ventilation. Many polio survivors had impairment of the diaphragmatic and intercostal muscles, and the normal changes due to aging may cause them to lose VC at a greater rate, thus exacerbating the development of hypoventilation.
Signs and symptoms include: fatigue, daytime sleepiness, morning headaches, need to sleep sitting up, sleep disturbances (including dreams of being smothered, nightmares, restless sleep, interrupted sleep), snoring, poor concentration and impaired intellectual function, shortness of breath on exertion, claustrophobia and/or feeling that the air in the room is somehow bad, anxiety, difficulty in speaking for more than a short time, quiet speech with fewer words per breath, use of accessory muscles to breath, and a weak cough with increased susceptibility to respiratory infections and pneumonias.
Polio survivors experiencing more than one of the above signs and symptoms should seek a respiratory evaluation by a pulmonologist, preferably one experienced in chronic neuromuscular disorders. Pulmonary function tests should include at least: VC, air flow, MIF (maximum inspiratory force) and MEF (maximum expiratory force), and ABG (arterial blood gases). A sleep study should also be considered. However, strong anecdotal evidence from polio survivors indicates that a sleep study may miss detection of hypoventilation. A sleep study is designed to detect sleep disturbances, such as sleep apnea: it does not measure CO2.
Management of breathing and sleep problems can be achieved largely through the use of nocturnal non-invasive ventilation, in the form of mouth intermittent positive pressure ventilation, nasal intermittent positive pressure ventilation ( a variety of commercial and custom nasal/face masks are available), and negative pressure body ventilators. However, polio survivors may find themselves gradually extending periods of ventilator use. In some cases, as a last resort, invasive tracheostomy positive pressure may be necessary.
Medical literature regarding the management of breathing problems often includes a warning about the use of oxygen therapy. Respiratory failure in polio survivors is usually due to hypo-ventilation which can be aggravated by the short and long term use of oxygen. When the brain senses an excess concentration of CO2 in the blood it instructs the body to increase breathing, ridding it of the CO2 and increasing the oxygen. When oxygen is supplied, the mechanism in the brain detection the CO2 eventually turns off. Hypercapnia is best treated with assisted ventilation.Polio survivors with different problems, such as COPD or pneumonia, may benefit from short term oxygen therapy under careful supervision.
REFERENCES:
*Advice for People with Polio or Other Neuromuscular Disorders by Augusta Alba, MD, and Alice Nolan, RN; Rehabilitation Gazette, Vol.23, 1980
Evaluation and Management of Post-Polio Respiratory Sequelae: Non-Invasive Options by John R. Bach, MD; Chapter 6, Post-Polio Syndrome (ISBN 1-56053-117-7) edited by Halstead and Grimby, published by Hanley and Belfus, Inc., Phila. PA (800-962-1982).
Suggestions for Avoiding Respiratory Complications by John R. Bach, MD; **I.V.U.N. News, Vol. 9, # 2, Fall 1994
Severe Hypercapnia After Low-Flow Oxygen in Patients With Neuromuscular Disease and Diaphragmatic Dysfunction by Peter C. Gay, MD, and Lee C. Edmonds, MD; Mayo Clinic Proceedings, Vol. 70, pp327-330; Editorial pp403-404, April 1995.
Noninvasive Ventilation: Does It Work, for Whom and How ? By Nicholas S. Hill, MD; American Review of Respiratory Disease, Vol. 147, pp. 1050-1055, 1993.
Comparison of Commercial and Custom Nasal/Face Masks by Susan Sortor Leger, RRT; I.V.U.N. News, Vol. 9, # 1, Spring ’95.
The Diagnosis of Underventilation Following Polio and Treatment of Underventilation by Day and by Night by G.G. Spencer, FAARCS; I.V.U.N. News, Vol. 2, No. 2, Fall 1988
*Available by sending a self-addressed #10 envelope with 32 cents postage to 4296 Lindell Blvd., #110, St. Louis MO 63108
**I.V.U.N. News, a bi-annual newsletter edited by Judith R. Fischer, links ventilator users and health care professionals. The annual subscription fee is $12. A complete set of 18 back issues is available for $25 postpaid. To order, contact G.I.N.I. 4207 Lindell Blvd, #110 St. Louis MO 63108-2915
From Polio Network News, Fall ’95, Vol. 11, #. 4
PRESCRIPTIONS BY MAIL
PCS Health Systems offers a mail-order program that may save you and your family some money, especially if you don’t have a prescription plan. Call daytime, 7 days a week for information: 1-800-793-4726. Sample price: Eldepryl, 90 5mg tabs, $1.85 per tablet.
Consider this…..
Research on PPS frequently requires tissue from a deceased polio survivor. The Brain Bank in Los Angeles has a database for the brains and spinal cords of polio survivors. Call me if you would like to discuss this. A handout isavailable.
Share-A-Ride
This registry is designed to provide transportation to support group meetings. If you need a ride or you can provide one please call Denise at (509) 926-5192.
Sharman’s News
from Sharman Collins
HAPPY SPRING! My dogs and I tour the yard daily looking for new signs of the change of season. Daffodils and crocuses are more appealing to me than piles of snow! After all, I have never been high-centered and stuck on a flower bed. I was stuck a few times this winter and had to abandon my scooter and walk to the house. A twenty-foot walk in ten inches of snow is the equivalent of a marathon for me! I have lost strength this winter. Too many activities and too much fatigue equal muscle loss when you have post-polio syndrome. Unfortunately, we must all pay careful attention to this equation.
We have some great programs lined up for all of us to enjoy! On March 26, Roland Lamarche of Goldenwest Manufacturing, Inc., will speak to us about large-scale mobility products. Goldenwest manufactures and installs van lifts, stairway chairs, and a variety of other products.
Laura Whitney, a respiratory therapist who works in Dr. Samuel Joseph’s office, will share her expertise concerning pulmonary function tests at our April meeting. Well-acquainted with the symptomology of post-polio syndrome, Laura will help us anticipate the types of tests we might need.
In May, Phyllis Stevens, the well-known gardening expert and landscape designer, will be our speaker. Phyllis is excited about teaching us techniques we can use to garden, even with reduced muscle strength. Kitchen herb gardens, raised flower beds, and light-weight tools are some of the topics she will discuss.
I am very excited to see you at these meetings! Our group has grown by leaps and bounds, and it continues to offer much needed support for all of us! I’ll see you at Shriner’s Hospital in the 5th floor auditorium at 6:00 p.m. Shriner’s is located at W. 911 5th Avenue in Spokane. There is easy access to the free parking garage and the 4th floor cafeteria. If you are able to join us for dinner before the meeting, Please be there by 5:00 p.m.
Much love to all of you,
Sharman
COMPUTER CONNECTION TO POLIO RESOURCES
Your computer is the gateway to the internet where you can find just about anything you would ever want to know about polio and post polio syndrome. Here are a few sites on the World Wide Web you will enjoy.
Polio Survivors Page Web site created by Tom Dempsey in Seattle, WA
http://www.eskimo.com/~dempt/polio/l
Recently Published Medical Articles on PPS Web site created by Ernie Wollering
http://execpc.com/~epwoll/medindx/l
On these two sites you will find articles and announcements, a Post-Polio information packet, newsletters from support groups, information about people, remembrances, history and a wealth of other good stuff.
The Rollin’ Rat — Post-Polio Syndrome Page Web site created by Dick Spears in Tucson, Arizona
http://www.indirect.com/www/rspear/rolli/l
Dick lists these major topics, supported with articles:
- Post-Polio Syndrome & Disabilities Resources
- The Cause and Symptoms of PPS
- Rehabilitation & Therapy
- Adaptations for Daily Living
- History of Polio and Post-Polio Syndrome
- Other Disabilities Resources
Then there is the Polio Connection from New York
http://www5.ios.com:80/~w1066/
Their yearbook is a wealth of good information.
Over 200 polio survivors from ten countries make up a very active Polio Mail List (also posted as a newsgroup). These folks participate by contributing their personal e-mail which is then received by all others on the list. Daily interaction occurs on any topic of mutual interest. You can join in by e-mailing to listserv@sjuvm.stjohns.edu. With a blank subject line, write:
Subscribe polio, yourfirstname, yourlastname. You will receive e-mail from cyberpals all over the world. It’s fun and it’s free!
America On-line subscribers may join in a post-polio live chat room on Tuesday nights. They also have an excellant resource library, keyword: disAbilities.
PEN & Ink
Mailing to provide experience-based advice and emotional support for polio survivors, family & friends.
Because you asked…
PEN & Ink comes to you free of charge – which delights its all-volunteer staff.
However, contributions for expenses of PEN & Ink and for helping polio survivors are welcome. Thank you! Send your check to… Polio Experience Network 24104 N. Jim Hill Rd.
Chattaroy, WA 99003
P.E.N. & Ink For Polio Survivors & Friends 508 Shoreline Drive
Liberty Lake, WA. 99019