Inspiration, news and knowledge from Polio Experience Network
No. 28: January/February, 1999
Sharman’s News
..Oxygen Supplementation and Polio – A CAUTION
..Christmas Luncheon
.. WEB FINDS
….“Choosing the Right Specialist,” by Darlene Hansen
..“When Friends Turn Away,” by Pat McGillivray
..Keep It Coming! – Subscription/Donation information
..“What Works For Me,” by Dave Graham
…………………………….P.O.S. Library
…………………………….Copyright information
Sharman’s News
from Sharman Collins
HAPPY NEW YEAR! Life is settling back into a post-Christmas routine at the Collins Home. My biggest concern now will be remembering it’s 1999! I have been skiing several times and plan to go once every weekend. What a thrill to be back up at Schweitzer Mountain Ski Resort with my family. I am able to ski about two runs, go in for coffee, ski two more runs, go in for lunch, ski two more and go home. Not my all-day skiathons like eight years ago, but a wonderful and thrilling experience for me.
Our first meeting of 1999 will be January 26. We will have a panel discussion of different aspects of coping with post-polio syndrome. On February 23, Marian Zoesch, a long-time support group member, who is an Occupational Therapist, will share her knowledge and experience with us. Marian has recently been to a conference and has new equipment and ideas she is eager to show. On March 23, several therapists from St. Luke’s Rehabilitation Institute will present to us information about their new program they have developed for individuals with post-polio syndrome.
I am looking forward to seeing you at all of these meetings! Shriners Hospital is located at W. 911 5th Avenue. There is easy access from the free parking garage located 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.
Lots of love from your friend, Sharman 
Oxygen Supplementation and Polio – A Caution
The following was originally published on the Internet through the Polio-life Listserver. The author, who wishes to remain anonymous, asked us to make it clear that the following advice is information for you to discuss with your healthcare professional. Though it is informed advice from one who has studied the question, it is not professionally “qualified medical advice.”
Many people who have had polio experience respiratory problems. Some physicians who deal with non-paralytic respiratory problems think that the same solutions work in all circumstances. If your doctor is proposing oxygen as a solution, please make sure that (s)he knows about the special needs of someone with a paralytic condition.
Breathing is a two-part function. 1) Your lungs must provide oxygen to the body, and 2) they must remove CO2 from the blood. There are normally two ways for a person to adapt to the needs for oxygen and CO2 removal. You can take larger breaths and/or you can take more frequent breaths. Unfortunately, both of these options can be difficult for someone with a neuromuscular disease, whether polio or any of a number of others. Increasing one’s breath size is difficult because of a paralyzed diaphragm, scoliosis or paralyzed intercostal muscles. Increased breath rate leads to fatigue of the muscles that do work and a larger oxygen demand because all muscle work will increase O2 demand. If you address this problem with respiratory support (BiPAP, positive or negative pressure respirator, etc.) you get both increased oxygen uptake and increased CO2 clearance. If you choose to do it by oxygen enrichment, you may solve the oxygen problem, but not the CO2 clearance problem. This leads to a buildup of CO2 in the blood.
Normally, your body has a feedback loop, which helps you adjust to changes in exercise, and hence oxygen demands. More exercise = more demand = more CO2. This leads to “respiratory acidosis”. The body detects the change in pH and says, “breathe faster” until the pH goes back up. There is a second feedback loop that looks at your oxygen level. If you have lived a fairly long time with chronic underventilation, your body can “ignore” the pH detector, and go on the oxygen level alone. This seems to be a “learned” behavior to suppress “air craving”. If you learn to ignore the pH side of the equation and you add supplemental oxygen, the body detects “enough” oxygen, and actually slows down breathing demand. This leads to even further CO2 problems. But you feel better because you feel like your need to fight for air has decreased. (And you are already “ignoring” the pH sensor.)
An additional complication is that oxygen is an “aggressive” chemical. At high concentrations, it actually attacks the lung tissue, and can lead to a pneumonia-like condition. Oxygen is also very dry, compared to normal air, so you have problems with drying of the tissues. This is why they use the “bubblers” on hospital oxygen lines. The dried-out tissues are much more susceptible to infection and problems with mucus clearing.
When is oxygen ever appropriate? 1) If your lung area is diminished (pneumonia, emphysema, etc.); or 2) if you have problems moving oxygen to the tissues, such as a lack of hemoglobin caused either by anemia or by CO (Carbon Monoxide) poisoning. CO chemically binds to the hemoglobin much more strongly than oxygen and stops the oxygen transport from the lungs to the tissues. There are other circumstances that require oxygen therapy. A good book on respiratory physiology will fill in more detail here.
The chronic use of oxygen is a slippery slope. Once you start down it, you can often get in real trouble. What you need to do is look at the whole equation. Most commonly, it’s not a problem with oxygen uptake. Rather, it’s chronic underventilation, which is solved by the use of ventilatory support.
Ventilatory support must also be approached carefully. Most of the people who had respiratory paralysis during the acute phase of polio had a very difficult time getting off the respirator even after their muscles had returned to “normal” enough to get them sufficient respiratory volume. Why? My theory is that after a few months of using a respirator (usually an iron lung) which had been set to too high a “pressure” / rate, they had become used to a higher than normal level of respiration and normal felt like they were starved for air. This is why doctors spent so much time and effort looking at both the respiratory rate and volume in and out of the respirator. If you were on respiratory help, while you were using it your doctors aimed to maintain a rate and volume that matched your demand, so that you wouldn’t get either over or under ventilated. During times you were momentarily off the support, your doctors wanted to see how much muscle capacity you had regained in hopes of getting you off respiratory support. This is a very tricky problem. You can get in trouble so very many ways.
Please see someone who really knows how to deal with respiratory insufficiency due to neuromuscular disease and how to tell the difference between that and other respiratory disease problems! Especially where they may coexist. Remember we can have other diseases besides polio!
You are wise to be careful with the “quick fix” which oxygen looks like it presents.
Christmas Luncheon Report
December 5 was the date of our Christmas luncheon. Forty-four people attended this fun time, held at the Shilo Inn. We give special recognition to these fine merchants for donating the many door prizes. And our thanks to Pat and Skip Amsden for collecting
them.
Owl Pharmacy – Savage House Pizza – Granny’s Buffet – Old Country Buffet – Golden Corral
Thanks also to Ann & Alex Looms for their donation.
A special appreciation to our friends Kandi Lair and Rona Nelson, President and Vice President of our State Polio Outreach association, who drove hundreds of miles to be with us.
A beautiful hand-made quilt was created and donated by Edee Bradley to be raffled off as our grand prize. Selling tickets for the raffle, we raised $209.00 The lucky winner was Jackie Stone. Thank you so very much Edee.
WEB FINDS
We have added a new link at polionet.org. The new link is to Rest Ministries, Inc., a service ministry for people who live with chronic illness or pain. Tim Hansel, author of “You Gotta Keep Dancin'” says, “Rest Ministries, Inc. is a pioneer in acknowledging chronic illness from an emotional and spiritual perspective… (they) genuinely understand pain and how to address it; with education, hope and of course, comfort.”
If you: (1) were initially diagnosed with polio years ago, (2) have since been diagnosed with post-polio syndrome, and (3) have seen a physical therapist in the last year, then a physical therapist trainee would like your participation in a survey. This survey “will offer insight as to current patient satisfaction with physical therapy and which areas of service clients may feel are not as beneficial. It may also be a means to discover ways to improve the patient-provider relationship for better quality of care.” The site address for the survey is: http://www.skally.net/ppsc/c-survey/
BUILDING YOUR MEDICAL TEAM 
By Darlene Hansen
PART 3
Choosing the Right Specialists or “Eenie, Meenie, Minie, Mo Again…”
Did you know that 70% of American physicians are specialists and only 30% are primary care practitioners? This makes it sometimes difficult to achieve balance in medical care. The relative scarcity of doctors who are eager to function as our general medical guides can make things complicated. It helps to understand the specialties. There are two medical disciplines: conventional (or traditional) and alternative. An insurance directory may define them this way:
Conventional
Primary Care Physicians – Also called Family Practice, and General Practitioners (GP). They may include Internists (MD); Osteopaths (DO) [fully qualified and licensed physicians who emphasize the relationship among nerves, muscles, bones and organs] or Physician’s Assistants (PAC). Fully licensed and certified, a PAC can do many things a physician can, and often has more time to spend with each patient.
Cardiologist – A physician trained in the action and diseases of the heart and vascular system.
Chiropractor (DC) – Chiropractors cannot prescribe drugs or perform surgery, but are licensed to use spinal manipulation to treat nerve-pinching disorders of the backbone. They rely primarily on high-velocity manipulations of the neck and back to correct them. Some chiropractors augment manipulation with vitamins, herbal remedies, or other alternative treatments. Others restrict their practice to spinal manipulation, but may be less willing to refer you to a medical doctor.
Gastroenterologist – A physician specializing in diagnosing and the treatment of stomach, intestines and the disorders affecting them (ulcers, gallstones, inguinal hernia, and other colon problems.)
Massage Therapist (LMP or RMP) – Massage therapists use a variety of soft-tissue manipulative techniques such a muscle kneading and compression to reduce stiffness and pain in muscles and tendons. By increasing circulation in the affected area, massage may help flush away cellular debris from damaged muscles and speed tissue repair. Not all states have licensing requirements, so the quality of care can vary.
Neurologist – A physician who specializes in the inter-relation of the nervous system, skeleton and muscles. They also may conduct tests that can diagnose post-polio syndrome.
Nutritionist or Dietitian (RD) – One educated to treat malnutrition, obesity, allergies, or other maladies through diet or specific foods.
Occupational Therapist (OT)- One who prescribes therapy by means of creative movement to effect promotion, recovery and rehabilitation.
Orthotist – A professional who makes, designs and fits orthopedic appliances to support, position or immobilize a part of the body.
Osteopaths – A physician who offers an attractive combination of broad medical knowledge and a special familiarity with spinal manipulation. Osteopaths can prescribe drugs and perform surgery, but will often try manipulation or physical therapy first. Most osteopaths are primary care physicians, and the specialty has a good reputation for its holistic view of health, including diet and exercise.
Physiatrist – Physiatrists are medical doctors but are not licensed to perform surgery. Like many other physicians, they recommend physical therapy, lifestyle changes, and braces but are less likely to hospitalize patients. With their emphasis on noninvasive techniques, physiatrists can be useful for a second opinion if surgery has been recommended. *When a person is applying for disability benefits, it is often a physiatrist’s diagnosis of post-polio syndrome that is required.
Physical Therapist (PT) – Specializes in improving joint and spine mobility and muscle strength. They are not licensed to take x rays, prescribe drugs, or perform surgery. Although patients are usually referred by physicians, some states allow physical therapists to treat patients without a referral. Physical therapists use various manipulative techniques and exercise equipment to increase range of motion in the back, joints, and limbs and to strengthen the muscles that hold the bones in place. They also use heat or cold, massage, and whirlpool baths to increase blood flow to muscles to speed healing.
Psychologist – One who specializes in the treatment of mental and behavioral characteristics of an individual, as they may contribute to ones health.
Pulmonologists – Are physicians who specialize in diseases and illnesses of the lungs.
Rheumatologists – Physicians specializing in rheumatoid arthritis, osteoarthritis and other arthritic conditions.
Speech and Communication Pathologists (CSLP) Specialists in speech difficulties, and swallowing problems.
This is not a complete list, but is the majority of the specialists we polio survivors may be referred to.
Alternative Medicine Providers and Therapies:
Acupuncture (LAC) and Acupressure – A practice of inserting needles or applying pressure to various parts of the body to relieve pain or disease.
Homeopathy – A medical philosophy that recognizes disease as an energy imbalance, a disturbance of the body’s ‘vital force’ expressed through symptoms; a philosophy that uses remedies to stimulate the body to heal itself. Remember, check these providers and any medical equipment or suppliers against your medical insurance coverage to avoid spending your financial resources needlessly.
When Friends Turn Away
By Pat McGillivray
In my life friends have come and gone like autumn leaves in a fall rainstorm; momentary blazes of color, until the ill-wind blows. With every leaf that fell from my fragile friendship tree, they drained the sap of life from my very heart. I struggled to protect myself from the onslaught of good intentions that lacked the conviction and perseverance necessary to stand by me in the darkest, bitter storm blast.
Fair-weather friends and even family spoke of help and encouragement, but they grew weary in the day-in and day-out nurturing of my life. I grew afraid to seek the sun, or trust a kindly word, because when the novelty of my illness wore off these friends became phantom memories, as elusive as a cobweb in the sun.
They pulled away and turned away and their absence became a roaring echo in the chambers of my heart. The silence of their good intentions accentuated my lonely cries, until at last, I could cry no more. But when the tears were dry and the trust was gone, God sent you, Jesus, an unexpected breath of fresh air in the midst of the stagnant emptiness. And in time I learned that we were as alike as we were different, and the differences only added body to our friendship.
You really cared and suddenly I wasn’t alone anymore. You will never know how often the sound of your voice helped me to face one more pain-racked day. There have been so many times that I just wanted to die and you provoked me to live. You have been a much better friend to me than I to You and I am so grateful that God sent me the gift of your friendship. So often you are the still, small voice that God has used to motivate me just one more time.
I do not know how to properly or adequately thank you for the gift of your friendship. Words seem insufficient and there is so little I can say. But I hope that you know how grateful I am and I hope that my life reflects in some way just how thankful I am. You are precious beyond measure. You are my best friend, Jesus. ——————————————–
Copyright 1998, “And He Will Give You Rest,” a newsletter for people who live with chronic illness or pain. Used with permission. For more info contact: Rest Ministries, Inc. PO Box 502886, San Diego, CA 92150, or 619-237-1698.
Keep it coming!
We get requests for P.E.N. & ink from all over the world – people who see the electronic version on the Internet and want their own “hard” copy, or folk who read someone else’s and want their own. It is gratifying to know that we are filling a need. As you know, we do not require a dollar amount for a subscription to P & I. We are aware that having a disability often affects the finances, and we want to continue to help those who cannot afford this resource. However, there are expenses to printing and mailing P.E.N. & ink and to keeping our Internet Website service available.
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What Works For Me
Post polio syndrome had me down and I didn’t even know what it was. I was quite disabled by increasing pain in numerous sites in my body and the fatigue, debilitating fatigue. Not knowing about PPS, I sought out professional help for some of the specific symptoms. I had various treatments from ultrasound and physical therapy to medications and surgery. I was grasping at every straw that the medical profession could offer. I went from my primary care physician to specialist after specialist, from institution to institution.
I don’t quite recall how I heard about post-polio syndrome, but my family doc was open to any possible answer. We pursued the premise and with the help of two specialists, hit the nail on the head. I had a classic case.
It has been seven or eight years since my diagnosis of post-polio syndrome and I now feel that I have it under control. It took time for me to realize just how sensitive PPS has made my body and then to be able to regulate it’s condition. Here is what worked for me.
First off, I had to quit a job that I had enjoyed doing for 28 years. It was slowly killing me. My job called for eight hours a day of focused activity. A person with PPS has to be in complete charge of their own time. I had to be able to lie down and rest periodically and I had to be in control of just how long I needed to rest based upon how I felt at that time. I believe a person cannot have that control and be employed full-time, regardless of the job. I had to quit doing motions that were repetitive in nature. My body could not sustain such activity.
I had to lose weight. I had to quit eating and drinking things that were not good for me. I had to examine my very existence, recording my activities, my medications and any unique happenings. I write them on a calendar. That way when I experience a problem or pain I can usually identify the reason for it.
I started a regular system of non-weight bearing exercises. I go to a 92 degree (f.) step-down (graduated depth) therapy pool twice a week. The activity is always slow and easy but, it works. The regimen was developed especially for me by a physical therapist that understands PPS.
This is what works for me.
Dave Graham,
P.E.N. & ink Editor
Polio Outreach of Spokane Library
Your resource for information on post-polio syndrome and disability issues.
Remember, you are not alone in your struggle. The problems that you or your loved one are experiencing now have been dealt with by others in the past. Their experiences are documented in some great material, all available in our library. Give Darlene a call and tell her what your difficulties are. She can send you the appropriate material.
A Paralyzing Fear: The Story of Polio In America. This excellent PBS presentation was shown at our August support group meeting. This is a must see for all polio survivors. Two video copies are now available locally.