You know, we hear from so many as to how they appreciate receiving "SAPPLING'S" and the information there-in, yet many have not yet paid their 1997 membership ($10.00). Your membership is tax deductible and is our main source of income covering the costs related to the Newsletter. How about sending in your $10.00 if YOU appreciate receiving "SAPPLING'S"
A question I am putting to all members in good standing: HOW WOULD YOU LIKE TO ATTEND THE '97 INTERNATIONAL POST POLIO CONFERENCE in Calgary, Alberta - September 28th to October 2nd, 1997? You know if you attend there is a bonus you get to meet a great bunch of zany Calgaryians'. "I know I spent a week in Ottawa with them"! Hi! all of you in Calgary!
We here at S.A.P.P. Provincial Office are in the process of soliciting sponsorship funds from a provincial service organization. We are asking for assistance in sponsoring polio survivors in the province to attend, directed at local members in their particular area. S.A.P.P. criteria of course is that the person be a member in good standing (is your 1997 membership paid), we need final cost confirmation before our requests go out. If you are interested, write us!
Saskatchewan Access Awareness Steering Committee (formally National Access Awareness Week Steering Committee), is announcing the formation of a Scholarship for $1,000.00., which will be awarded annually in August. Candidates are people with disabilities as defined by the Saskatchewan Human Rights Code, to assist an individual with a disability to obtain further education to enhance her/his long- term employability and quality of life. For Information call either Bev or Terry at (306)569-3111, or by mail, to: SAASC Scholarship Committee, c/o Saskatchewan Voice of People with Disabilities, 1024 Winnipeg Street, Regina, SK S4R 8P8. Applications must be received no later then April 15, 1997 to be considered.
We have other fund raisers on the burner, some of which will mean much organization and support from members in rural areas. Something to think about.
Have any of you checked out our web site Home Page, we are receiving requests from the most unexpected places. These we answer to the best of our ability, but we also refer them to other post polio organizations with web sites, many of which can be accessed through a provided link.
Ron Johnson is the president of SAPP and can be reached at Office: (306) 477-7002 or Home: (306) 343-0225
Dear Ron Johnson,
I would like to express my thanks to you, and all those at the Saskatchewan Awareness of Post Polio Society for your assistance with our research, here at City Hospital. The study is now complete and is being submitted for publication. It is entitled:
Investigation for the Presence of Electromyographic Insertional Activity In Muscles Affected by the Postpolio Syndrome
A copy of the Study is enclosed. I would ask that this unpublished work not be distrubuted until it has been accepted for publication. I will notify you of this if and when it occurs.
The aim of the study was to determine whether the absence of electromyographic insertional activity could be considered an additional criteria for diagnosis of Postpolio syndrome. We found that 31% of muscles affected by Postpolio syndrome lacked insertional activity. Previous reports indicate 100% concordance, which we did not find. We did find that Postpolio affected muscles have a higher incidence of absent insertional activity vs. non-affected muscles. This result indicates that if the diagnosis is in doubt on clinical grounds, the absence of insertional activity may lend further credence to the diagnosis.
I would be very happy to present this to the society in the future. As I am currently in my residency training, I will be out of province until October, 1997. I look forward to meeting with you Ron, and all of the members of the Post Polio Society again.
Once again my most sincere thanks.
Sincerely, Barry Bernacki, M.D., Dept. of Rehabilitation Medicine, Saskatoon City Hospital
Last January I got a brand new Macintosh computer that came with a modem. Ever since I've been "surfing" the Internet, hardly stopping for food or sleep. You'd be amazed at what I'm finding on the disABILITIES bulletin boards: Sex. Yes, unbridled, undiluted and unimpeded discussions about sex among people with all kinds of disabilities, from high-level quads to quadruple amputees. However, there is one place where I've heard no discussion of sex: the Post-Polio bulletin board. There are lots of questions about PPS that you had the answers to years ago: Do I have ALS; does exercise make you weak; where can I get a scooter? But, not one question or comment about sex.
I guess I shouldn't be surprised. Many of our patients at Kessler don't mention sex, either. Some mention that spouses do not believe that PPS symptoms are "real." But, most often spouses are very supportive about the need for their post-polio mate to slow down and take care of themselves, even if that means a new brace, crutches or a scooter. So, if spouses are so supportive, why is there no mention of sex?
ALL'S TOO QUITE ON THE SOUTHERN FRONT
There are probably several reasons for the lack of talk about sex:
* Many polio survivors grew up in the 50's when discussing sex was the same as walking down Main Street without your pants. Also, 40 years ago, even more than today, people with disabilities were thought not to be fully human, let alone sexual beings;
* Also, it was vital back in the dark ages that anything not "normal" (that is anything not seen on Ozzie and Harriette) be hidden. So, if a polio survivor expected to have a relationship with someone the disability had to be hidden. Since the polio residuals were often hard to hide, the disability was often just ignored or denied. It amazes me still how many survivors tell me that they have never, ever discussed the fact they had polio with their spouse, let alone the experience of having had polio or - God forbid - their feelings about it.
The process of hiding, denying or ignoring the reality of what's happening in one's body caused problems. Many people just turned off any awareness of their bodies and any feelings they have below the neck. Others have turned off ALL feelings, both below and above the neck. Since you can't turn off pain without turning off pleasure as well, an inability to feel will make sensuality or sexuality nearly impossible - or as appealing as eating dry toast.
Also, walling off one's feelings also cuts off the ability to be intimate with oneself and with others. And, intimacy is the gateway to sexuality.
* Having a visible disability at an early age can result in other barriers to intimacy and sexuality. There is a disturbingly high frequency of physical, emotional and sexual abuse among polio survivors. Nearly one third of the patients we treat have been physically or emotionally abused, and 25% of the women have been sexually abused. Not surprisingly, those who have been abused are much less likely to risk intimacy or be interested in sex.
Also not surprisingly, the more obvious the assistive device people used following polio the more likely it was that had been abused. No wonder polio survivors discarded their braces and crutches and don't want them back - ever! Now, 40 years later when PPS symptoms start and braces, crutches and wheelchairs are appearing again, the painful memories of the past and the reality of disability can no-longer be hidden. Old fears of unacceptability and new fears of rejection surface and cut self-esteem off at the pass. And, the old viscious Rules of Society also come screaming back:
"IF I THINK I'M SEXY AND I LIKE MY BODY..."
Well, sexy is a sexy thinks. One of the disABILITIES bulletin boards is actually called "Sex is 99% Mental." Sure you may not look like Cindy Crawford or Mel Gibson. But, how many non-disabled people do? What counts is how you feel about yourself, not how you look to others. If you're not acceptable to yourself, you wont be sexually available to or even intimate with others.
The first step to intimacy and sexuality is recognizing and dealing with the emotional reality of the original polio and any abuse you have experienced because if it. Next, you need to identify your own negative feelings about yourself and stop projecting them in to the heads of potential friends and lovers. Since a whopping 72% of polio survivors are married, it's your spouse's head that you're filling with your own negative thoughts about yourself and fears of rejection.
Finally, if you turned off your body to stop feeling physical pain, you need the experience of good physical feelings. You need to decrease your PPS fatigue, muscle weakness, and pain by decreasing physical and emotional stress. Then, you need to start sending pleasant physical sensation to your brain. Try long hot baths, a whirlpool or best of all a massage. When your make nice to your body and good feelings start traveling to your head, other good physical sensations (like the erotic ones) will follow that "stairway (or ramp) to heaven."
For those who are single, get a computer, a modem and start "surfing the net." It is actually possible to meet hundreds of people without leaving you living room. Whether you decide to let them into your life (or your bedroom), the safety of the computer gives you the freedom to be yourself and even practice being intimate with others, without worrying that everyone is looking ONLY at your brace.
When all is said and done, here's the Golden Rule for being an intimate and sexy polio survivor (with apologies to Nike):
Turn off your thoughts, turn on your body and JUST DO IT!
Dr. Richard Bruno is with the Post-Polio Service at the Kessler Institute for Rehabilitation
There are four generally recognized forms of poliomyelitis. The Asymptomatic Carrier, the Abortive, the Non-Paralytic, and the Paralytic. The first two have no known lasting effects and will not be dealt with in this reference.
The non-paralytic form of poliomyelitis is usually indicated by nausea, headache, sore throat, back and neck pain, and stiffness. In addition, there are changes in reflexes and elevated spinal fluid cell count. It is estimated that 65% of recognizable cases during the polio epidemics were non-paralytic. It is possible that there may be some unrecognized muscle involvement.
Paralytic poliomyelitis shows the same symptoms as non-paralytic plus weakness in one or more muscle groups. It is commonly classified in the following manner:
SPINAL: This type is most frequent and is associated with involvement of trunk or extremities; more often the lower extremities. Weakness does not fit any pattern.
BULBAR: Symptoms can include difficulty in swallowing, loss of voice quality, and sometimes tongue and facial paralysis.
BULBOSPINAL: This type of involvement is usually severe and is associated with respiratory impairment.
Ten to twenty-five percent of paralytic cases seen during the polio epidemics were of bulbar or bulbospinal type.
The polio virus affects the body; by attacking the central nervous system; specifically the anterior horn cells. These motor neurons are located in the front part of the spinal cord and are essential for any muscle activity.
The motor neurons rooted in the anterior horn travel outward through the peripheral nerves to innervate muscle fibre. Depending on the location of the muscles they supply. These motor neurons can be a few inches or several feet long. Sensory nerves travel from their specialized receptors to the spinal cord and enter the posterior horn. Sensory nerves are rarely affected by the polio virus.
Many individuals lost considerable function during the acute stage of polio but regained a large part of that function. It appears, however, that a percentage of these individuals are experiencing renewed weakness, sometimes accompanied by fatigue or pain. Definitive studies are incomplete, but the best medical evidence at this time would indicate that a combination of factors associated with overuse are responsible.
If we take a closer look at the recovery process we can see why this is so. The polio virus attacks randomly. Sometimes motor neuron damage is not severe and the cells can recover much of their function. Other neurons may sustain more complete and irreversible damage. Even if this is the case, however, function can often be restored by "sprouting". Motor neuron cells have the ability to send out new axons that can innervate neighbouring muscle fibres whose own neurons have been destroyed. Motor neurons normally innervate between 200 and 500 individual muscle fibres. If a percentage of motor neurons are destroyed, and sprouting takes place, the remaining motor neurons may be innervating as much as four times the normal amount of muscle fibre. It is assumed that the additional load that this places on motor neuron metabolism will, over the years, cause a failure of impulse strength. This seems to begin about 20 to 30 years after polio onset, and is probably a contributing factor for the renewal of weakness.
Another possible cause for this renewed weakness, especially in older individuals, is a normal part of aging. It is estimated that a person will begin to lose about one percent of their motor neurons per year after the age of 60. This is not very significant if an individual starts with 100% of their motor neurons, and all are intact and undamaged. Unfortunately, this is not the case with many individuals. Their supply was depleted by the polio virus, and this gradual loss will have a much greater impact.
Some individuals may have gained a degree of recovery by building up the strength of their remaining musculature by exercise and intense use similar to athletic training; a term called hypertrophy. These individuals, however, used this strength in their day-to-day activities and thus the muscles have been performing continually at a level that is no longer tolerated.
In addition, many affected muscles that were believed to be "good"or "normal" with manual muscle testing, have been found to be less than this when EMG and other studies were done. In normal activities these muscles have also been working harder than was once believed.
Muscle weakness due to polio is often asymmetrical. This can put added stress on the entire neuromuscular system, as well as adding strain to joints and supporting ligaments. The result may be an increase in arthritis-like pain.
The question now arises, what can be done to alleviate this condition or prevent the further degradation of muscle strength?
First, an individual should seek medical advice to rule out other possible causes for their symptoms. Just because a person has had polio does not make them immune from other physical ailments. Second, it is highly recommended that a complete physical evaluation be done. This should include examination by an orthopaedic specialist, and complete pulmonary function tests. Ideally, these should be done by physicians who are familiar with polio. You should ask for these test results in writing. Even if no immediate problem exists, this will provide a baseline for measuring your future status.
Lifestyle modification is the most important therapy for new weakness. This will reduce the strain placed on the body. Learning to listen to the body's signals is vital to any plan designed to reduce further degradation of muscle strength. If you're tired, rest. If you hurt, stop.
An orthopaedic specialist may recommend braces, or other assistive devices, to help relieve the stress that is being place upon weakened muscles and joints. In some cases this is sufficient to halt the progression of weakness. Selective surgery can sometimes redistribute the residual control so that strain progression of weakness. Selective surgery can sometimes redistribute the residual control so that strain is reduced.
Using assistive devices (electric wheelchairs, scooters, etc.) is resisted by some individuals. They feel that they are "giving in" to their new symptoms. What they assume to be a burden can actually be very liberating. Using these aids will allow them to conserve their energy for those activities that they feel are most important.
Because pulmonary function has such an important bearing on an individual's general health, this area deserves special emphasis. Standard tables for vital capacities list variables for age and height. These may not have much relevance for many of us. Actual volume, measured in litres or millilitres, is a better indicator of pulmonary status. It is a good idea to have your vital capacity measure lying down, as well as sitting. For anyone with a volume of less than two litres a follow up should be made at least yearly.
Arterial blood gas measurements for CO2 may be warranted. Generally, CO2 levels between 35 and 45 are considered normal. The CO2 level in your blood can become elevated, gradually, without one being aware of the change. If the level becomes high enough, the blood's ability to carry oxygen will be impaired. This could result in headaches or interrupted sleep patterns and may be an indicator of respiratory insufficiency. Respiratory function can also be affected by scoliosis or reduction in rib cage flexibility that often occurs as a person ages.
Many individuals have asked about the roll of exercise for those experiencing the late effects of polio. Unfortunately, the jury is still out on this question. There have been studies that indicate a ten percent increase in muscle strength following closely monitored exercise programs. But the number of participants was too small to come to any definite conclusion. If a person feels they may benefit from additional exercise, then an aerobic type of exercise is probably best. A twenty minute program consisting of two to three minutes of activity followed by a minute of rest could be tried. If this makes you feel better continue but, if pain or fatigue results, reduce the exercise until you find a level that can be tolerated. Stopping completely bay be best. A significant percentage of polio survivors get all the exercise they can tolerate in their activities of daily living. And, if it is true that overuse is a contributing cause of renewed muscle weakness then strenuous exercise regimens should be approached with caution.
The United States Department of Health estimates that there are 1.6 million polio survivors. Although a significant percentage of these polio survivors are experiencing some late effects there is no reason to expect that all individuals will be affected. If you would like more information on this and related topics we recommend you read the various publications of the Gazette International Networking Institute (G.I.N.I.). The Rehabilitation Gazette, and its predecessor, the Toomey J. Gazette, has been published since 1958. It comes out twice a year and a subscription is $12.00 for individuals. The International Ventilator Users Network (I.V.U.N.) News is $8.00 per year for ventilator users, and is an excellent resource for those with pulmonary impairment. The "Handbook on the Late Effects of Poliomyelitis for Physicians and Survivors" contains useful information on polio and related subjects.
Inquiries relating to these publications should be directed to G.I.N.I. at 5100 Oakland Ave., #206, St. Louis MO 63110.
Polio Survivors Association, 12720 La Reina Ave., Downey, California 90242
"Eat this. Don't eat that." It is likely that you have heard those words recently. Nutrition is a popular topic. Countless books and reports on nutrition are written every day. Much conflicting information can be heard on television and radio or read about in newspapers, in magazines, and via the Internet. Many Canadians recognize the importance of nutrition to their health. Unfortunately, there is much confusion about how to choose foods that will ensure a healthy, balanced diet. Often the words "good nutrition" are equated with deprivation, guilt, and complexity. Misconceptions about nutrition are preventing many people from taking the simple steps to a healthier eating pattern.
Yet, choosing nutritious foods may be easier than you think. To help you get on track, nutrition professionals from across the country have joined together to promote Nutrition Month in March. The theme this year is "All Foods Can Fit" into a healthy diet.
Choosing a healthy diet is as easy as 1, 2, 3 - just follow the guidelines listed below:
1. Refer to Canada's Food Guide To Healthy Eating when planning meals and snacks. This guide is divided into food groups and provides you with information on the amounts and types of foods to choose for healthy eating. The food groups are: Grain Products, Vegetables and Fruit, Milk Products, Meat and Alternatives, and the Other Foods category. A copy of the food guide is available from you local public health nutritionist or dietitian.
2. Choose a variety of foods everyday. There is no perfect food. To get all the nutrients your body needs, eat a variety of foods from all four food groups every day. Expand your taste buds by eating different kinds of foods, prepared using a variety of cooking methods. For example, try dried beans or lentils with or instead of meat as a main dish. Alternative cooking methods may include stir frying, steaming, broiling, and poaching.
3. Moderation is the key to making all foods a part of healthy eating. Choose foods that are lower in fat more often. For example, choose more vegetables and fruit, dried peas, beans and lentils, and whole grain or enriched breads and cereals. Choose smaller amount of foods higher in fat, sugar, and/or salt, such as rich desserts, potato chips, chocolate bars, and soft drinks.
Choose vitality for life. Vitality is about eating well, being active, and feeling good about yourself. It is a lifestyle for everyone. You have the power to take control of your life and make choices that will affect your health. Try to choose a variety of foods from all the food groups every day. Find physical activities that you enjoy, and do them often. These can be as simple as doing some stretching exercises while watching television or going for a walk....to more demanding activities such as downhill skiing. Physical activity reduces stress, strengthens your heart and lungs, makes you feel more energetic, and helps you maintain you body weight. People with a healthy self-esteem see themselves and their abilities in a positive light. They accept themselves and recognize that healthy bodies come in a variety of shapes and sizes. As an added benefit, people who feel good about themselves are more likely to choose a nutritious diet and enjoy an active lifestyle.
To learn more about healthy eating, contact a dietitian or public health nutritionist. They are the ideal source for reliable, up-to-date food and nutrition advice.
For more information, contact your local dietitian or public health nutritionist or surf by the Web site at http://www.dietitions.ca/eatwell. All foods can fit into a healthy diet. Make you choices work for you.
Written by the Public Health Nutritionists of Saskatchewan. Contact Johanna Bergerman at (306) 655-4630
Alcohol is a drug. It may:
Individuals with any respiratory weakness should avoid alcohol, especially before bedtime.
Before medications try:
COUGH MEDICINES AND EXPECTORANTS.
These suppress coughing or loosen secretions. They also cause drowsiness, decreased co- ordination, may give a feeling of chilliness. They may contain alcohol or a "narcotic like" drug which is constipating (eg codeine, dextromethor-phan, pholcodeine).
ANTIHISTAMINES, ALLERGY, MOTION SICKNESS DRUGS:
Examples are: Benadryl, Aller/G, Phenergan, Polaramine, Zadine. These older less expensive brands may cause drowsiness and increase fatigue.
These are the most abused class of drugs and long term use can cause addiction. There are two classes:
1. Non Narcotic Analgesics
Although some may be procured over-the-counter, they are real drugs, with potential side effects, interaction effects or dependency effects. Examples are: paracentemol eg Pamol, Panadol, non-steroidal anti-inflammatory drugs (NSAIDs) such as: Aspirin, Brufen, Nurofen, Voltaren, Clinoril, Ponstan, Cataflam. NSAIDs can control inflammation and pain but may cause dizziness, muscle weakness, drowsiness.
2. Narcotic Analgesics
These may be used in dental surgery, other surgeries, or as sedatives, pain relieving drugs. Examples are: Codeine, DHC, Morphine, Pethidine, Propo-zyphene (Degesic, Capadex, Doloxene)
THINGS TO CONSIDER:
APPETITE SUPPRESSING DIET MEDICATION
These can have a stimulant effect and may be addictive. (eg Tenuate, Dospan, Ponderax). They should be avoided. Avoid over-exertion, use a work-rest lifestyle.
Many of the anti-anxiety and sleeping pill drugs are benzodiazepines (eg Ativan, Halcion, Normison, Serepax, Valium) are also muscle relaxants, sedatives and may increase fatigue and decrease strength, and have some risk of addiction.
This is only a brief review. Drugs taken for cardio-pulmonary and other problems may have important interactions with polio related symptoms.
Only you can identify yourself as a polio survivor to your doctor, ensure your doctor knows what drugs you are taking, and become familiar with potential side effects.
Always remember, it is no solution to take medications and continue to abuse your joints and muscles; change your lifestyle and protect your joints and muscles FIRST.
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