Saskatchewan Awareness of Post Polio Society Inc.
First and foremost on behalf of the Board myself and Sharon we wish everyone Seasons Greetings and a Prosperous 1998. Now a reminder our 1998 Membership is Due.
My report will be based on the Calgary 97' Post Polio International Conference. We had 14 S.A.P.P. members invade Calgary, 6 members attending on their own and 4 sponsored by Provincial and 3 sponsored by Saskatoon. Located geographically those not sponsored are 4 Shellbrook, 1 Arelee, 1 Saskatoon. Those members sponsored are 2 Regina, 1 Craik, 1 Marshall, 1 Prince Albert and 3 Saskatoon. Our "THANKS" are extended the Knights of Columbus Council # 5353 Spirtwood who through the Provincial sponsored the member from Prince Albert, "THANK YOU"!
The total conference was great, with a good range of professional speakers, workshops, interaction with other survivors and that wonderful Calgary Hospitality. Our congratulations and thanks to the Conference Committee, with special consideration to Dodi and Reny.
At 6:00 P.M. Saturday we arrived renewed some old friendships and made contact with new friends. Sunday - Registration and a Stampede Brunch. With Gary McPherson giving the "Politicians Welcome" - this was one interesting individual.
Christopher Rutty, presented his Thesis "History of Polio in Canada", this was followed by (Question period). We have Chris's thesis in our library.
Next Arty Coppes with Alberta Children's Hospital, "Their Part in the History of Polio". one of our members had been spent time at Children's Hospital. Some of the nurses were present to renew acquaintance and tell some tales on survivors.
Monday - Dr. R. Feldman, "Non-fatiguing exercises" Followed by a (Questions period).
Derek Wilken, "The sense of Humour" in this everyone in the room participated, learning that a sense of humour is an important factor in survival. This was eye opening and entertaining.
Our Lunch time was arranged each day as to include a Nap Time. After lunch we had Dr. Pim, Alberta Health, "The importance of Immunization"-This was one of the best presentations on Immunization I have heard. (Question period).
An interesting workshop on humour in catastrophe, by Derek Wilken participants finding humour in an "Ann Landers" type letter was in the order before Dinner.
After dinner was the class for Physio Therapists, presented by Dr. Feldman and his Therapist Anita Clarke.
Tuesday - Rev. Schienbein, "Multiple Losses", Survivors and Spouses, Questions period, this left a great deal of room for thought, the relativity was something I had not realized, but it is there.
Dr. Marny Eulberg, a General Practitioner and researcher and herself a survivor spoke on, "What your Doctor should Know" (Question period) - Lunch & NT
Dr. Richard Bruno, with a definite place in life's pattern. "Fatigue and the Post Polio Brain" (now I have an legit excuse ?) (Question period).
Two workshops before Dinner, one Presented by Physiotherapists from Denmark and what was happening there with Post Polio, The National Society of Polio and Accident Victims in Denmark (PTU) is a society of persons disabled by Polio or injuries caused by accidents. The other Workshop was for partners of survivors by Rev. Schienbein, Workshop on obtaining and holding Volunteers.
Wednesday - Medical Day, was a free day with some tours planned for the others. "STAMPEDE STYLE BANQUET" this was some event and enjoyed by all, great hospitality and entertainment.
Thursday - Dr. Karen E.Pape was scheduled but was unable to attend. Dr. Pape's spot for Medical Day and Thursday was filled by Regina's Dr. Mavis Matheson, an overall examination of daily activities was the subject. (Question period)
Dr. Daria A. Trojan of McGill University, "Pharmacological use in the treatment of PPS", (Question period) - Lunch & NT -
Drs. Bruno and Frick, (Spouses and Survivors), "International Post Polio Survey includes PPS & Childhood Trauma" We are enclosing some survey forms if you would, please fill as directed on each form and forward on to Dr. Richard Bruno, Post-Polio Rehabilitation and Research Service, Kessler Institute for Rehabilitation, 300 Market Street, Saddle Brook, New Jersey 07663 U.S.A.
The week was concluded by a gathering of about 15 of us in a farewell supper with intentions of renewing acquaintances again. Information material in relation to the conference will be made available as soon as it is received.
Ron Johnson, President
Effective September 15, 1997 the disabled licence plate will no longer be issued under the Disabled Parking program. We will, however, continue to provide the disabled placard to people with qualifying disabilities. This will bring Saskatchewan's disabled parking program in line with most other Canadian jurisdictions.
Disabled licence plates currently in use will be grandfathered for two years. Those customers with existing disabled licence plates can convert to regular licence plates at no additional cost at renewal time.
This change will reduce administration of the program while providing the same privileges and conveniences. In addition, it will reduce the potential abuse of the program whereby two vehicles are displaying disabled parking symbols; the plate on one vehicle and the corresponding placard on another.
If you have any questions, please call either:
About once a month I get a call from an attorney somewhere in these litigious United States. I am asked to be the expert witness for a polio survivor who's been rear-ended in their car, hit by a bus, taken a header down some stairs or simply slipped and fell. Regardless of the type of accident, the lawyer always asks the same question: Can a traumatic event trigger Post-Polio Sequelae, the new and sometimes disabling muscle weakness, fatigue, pain and respiratory problems that occur is as many as 77% of polio survivors? And regardless of the type of accident, my answer is always the same: Yes and no. PPS is not a disease that is just waiting inside polio survivors for a trigger to set it loose to wreak havoc throughout the body. So trauma can't trigger a disease that is not there.
But our 1985 National Survey did show that PPS symptoms are caused by physically or emotionally stressing the poliovirus-damaged motor nerves that remained after survivors' original bout with polio. Many polio survivors have been able to function for 40 years with about half the spinal motor nerves of someone who didn't have polio. So breaking a leg in a fall, having major surgery -- even a whiplash injury -- could sufficiently stress the remaining polio-damaged motor neurons to "blow a fuse" When those fuses blow, neurons function less well and muscle weakness, fatigue, pain may result.
Many polio survivors are terrified about about losing function after trauma. One survivor said, "I am afraid if I fall and break something I will never walk again." Fear also causes polio survivors to postpone even necessary surgery because, as one survivor put it, "I know I'll never survive the anesthetic. I will spend the rest of my days in an iron lung."
Because of the fear that an injury or surgery could cause PPS, we wanted to find out just how many of our patients actually experienced new symptoms after trauma, what those symptoms were, whether they spread throughout the body and whether they were irreversible or treatable.
Surgery, Spills and Other Ills.
We reviewed the histories of 244 consecutive polio survivors evaluated by Kessler Institute's Post-Polio Service who had no other conditions that might cause new fatigue, weakness or pain. Of those patients, 44 (18%) said that their PPS began after a traumatic event. The typical patient was 59 years old and had polio at age 8 in the early 1940's. There were as many men as women reporting these post-traumatic PPS.
The traumas that preceded new symptoms included medical illnesses and surgeries (pneumonia, viral infection, hysterectomy, mastectomy with chemotherapy, pregnancy), fractures of the ankle, leg or hip, falls, auto accidents, and injury or surgery to the leg (ankle sprains, knee surgery, hip or knee replacement) or the back (herniated discs, laminectomies, spinal fusions). The most common injury was to the leg (71% of patients) while 26% had back injuries. Regardless of the type of trauma or location of the injury, the most common symptom reported was new muscle weakness (55% of patients) followed by pain (34%) and fatigue (11%).
There was no evidence that new symptoms began in an injured area and then "spread" throughout the body. Seventy-one percent of patients had new symptoms only in the body area that had been injured, while 26% had symptoms in the injured area plus one other nearby location. For example, 40% of those who injured one leg developed weakness or pain in the other leg.
This is a common problem for polio survivors, who compensate for injury to one part of the body by overusing another part whose nerves were also damaged by the poliovirus.
Only 5% of patients developed symptoms in more than two body areas. One patient who had a hip replacement reported "loss of muscle tone all over," while another who had been in a coma after an auto accident reported weakness in all of his muscles. Two patients who had had fractures, two with back injuries and one with an ankle injury reported new fatigue. However, no patient reported that their trauma "triggered" symptoms unrelated to the injury, such as arm weakness after breaking a leg or difficulty swallowing following a knee replacement.
Can Post-Traumatic PPS be Treated?
All of the clinical experience and research on treating non-traumatic PPS supports one conclusion: If patients decrease physical and emotional stress their symptoms will at very least stop progressing and typically will get noticeably better. Does this hold true for post-traumatic PPS? There's good news and bad news. The bad news is that the majority (63%) of patients with post-traumatic symptoms refused treatment altogether or refused to complete therapy for their symptoms; more than twice as many post-traumatic PPS patients actually quit therapy. What might cause this? Seventy-seven percent of those who had a psychiatric diagnosis refused therapy, versus 53% of those without psychological problems. The most frequent psychiatric problem was a major depressive episode; 89% of those who were depressed refused therapy. Depression has been identified before as a significant cause of therapy refusal in polio survivors and highlights how important it is for psychological problems to be identified and treated if therapies for PPS are to even begin.
The good news is that 86% of patients regardless of the type of trauma or severity of their injuries had significant reductions in pain, fatigue and muscle weakness after complying with therapies known to be effective in treating PPS: reducing physical and emotional stress, using appropriate assistive devices, energy conservation, adequate rest and the pacing of activities.
The remaining patients experienced a reduction in some symptoms, especially pain, but continued to report muscle weakness or fatigue. Two patients who did not stop strenuous work or recreational activities reported slowly increasing muscle weakness and pain over several years. Another patient who had been thrown to the floor of a van in 1995 reported that muscle strength and endurance in her legs increased only slightly after therapy even though her severe back pain has been eliminated. It is noteworthy that this patient had completely recovered from two previous traumas: a fall early in 1995 that fractured her lower right leg and another auto accident seven years before that herniated a disc. This patient's ability to recover from two previous traumas is also good news. For each of our patients who reported PPS symptoms after a trauma there was at least one other patient who had had the same trauma but did not develop PPS. So while trauma can be sufficient to cause PPS, PPS do not necessarily "cometh after a fall."
The Golden Rule
These findings in our patients should put polio survivors' minds at ease. Neither major surgery nor even a fall that causes a fracture will necessarily push polio survivors down a slippery slope toward total disability. Still, caution must be exercised since damaged motor neurons make polio survivors more susceptible to problems that typically do follow trauma. A leg that has been in a cast for months can become weak, as can the opposite leg that has had to take up the slack for its damaged partner. And bed rest after surgery can more easily cause deconditioning and fatigue in polio survivors.
However, post-traumatic symptoms in polio survivors should not be treated aggressively as they often are in those who didn't have polio. All PPS need to be treated carefully and slowly. Polio survivors and their therapists should not assume that a leg weakened after being in a cast has merely "been resting too long" and will respond to an aggressive program of weight lifting. Polio survivors who have had surgery should not be rushed out of bed to prevent deconditioning, because the lingering effects of anesthetic and post-operative pain are more likely to cause falls than to prevent fatigue.
Regardless of the cause of PPS the "Golden Rule" for polio survivors always applies: "If an activity causes fatigue, weakness or pain, don't do it!"
Doctors, nurses, and therapists must listen carefully to their patients -- and polio survivors must listen carefully to their own bodies -- to determine how much exercise or therapy causes fatigue, weakness or pain, and to stop before those symptoms appear, so that therapy for PPS does not become just another type of trauma.
The experience of our patients is that post-traumatic PPS are treatable if polio survivors follow through with therapy. But even more important is that many traumas can be avoided, like the falls and fractures caused by compulsive overdoing, ignoring new muscle weakness and refusing to use a needed brace, cane or crutch. For polio survivors physical overexertion, like pride, does goeth before a fall.
THE BINGE BLUES
All foods can fit into our regular eating pattern. However, come people do not believe this, and the result can be an episode of overeating or binging.
People binge, or overeat, for a number of reasons. They may have been deprived of something for too long or may have allowed themselves to get too hungry. Eating regularly throughout the day keeps you from binging because of excessive hunger. Giving yourself permission to eat your favourite foods prevents you from overeating those foods on selected occasions.
Do you sound like any of these people?
"Uncle Joe is getting married on Saturday. I planned to starve all week to compensate for my anticipated eating binge at the reception. But my willpower ran out mid-week, and I emptied the cookie jar in a matter of minutes. My nagging hunger got the best of me."
Overeating at social occasions, once in a while, is a part of life. Healthy eating is the sum total of food choices over time. It is not based on one food or meal. During special occasions, people often feel social pressure to eat. They eat to be sociable or polite rather than to satisfy physical hunger. Ask yourself if you are eating simply because everyone else is eating or if you want to eat because you are hungry. Eating regularly and not starving yourself helps to prevent overeating.
"Rush! Rush! Rush! No time for breakfast - again! I only had 10 minutes for lunch. By 4 o'clock, I felt run down, tired, and clumsy. I raided the fridge as soon as I got home from work, ate supper, and then munched until bedtime. I feel like I'm losing control."
If your schedule is so busy that you cannot take time for a meal, or if you now you might miss a meal, take something to eat on-the-go to avoid becoming overly hungry. Handy snacks such as cheese, crackers, fruit, yogurt, raw vegetables, cereal bars, homemade muffins, graham crackers, dry cereal, bagels, or lower fat granola bars are a healthful alternative to a skipped meal. Building in some relaxing "time out" from your rushed schedule gives you a chance to nourish and refuel your body. You will feel more alert and be less likely to overeat later in the day.
"My life seems to be centred around the do's and don'ts of eating. I can't eat cream filled cookies, potato chips, cake, ice cream, butter, or chocolate covered almonds because they are on my list of bad foods. In fact, I don't even keep these foods in my house. Potato chips are my favourite forbidden food. Yesterday I had a craving I couldn't deny. I stopped at the corner store on my way home from work and picked up the biggest bag of potato chips I could find. I intended to eat a few and save the rest for later. By the time I got home, I realized I had eaten the whole bag. I feel guilty for indulging."
Deprivation results in binging. Once you have been deprived for so long, you may not be able to control yourself. Do not deny yourself the foods you like. Eat small portions when you want to. To avoid binging, take your time, eat slowly, and stop to savour your favourite foods. When you realize you do not have to give up your favourite foods but can have them when you want, then eating only a bite or two to get the satisfaction from the food becomes easier.
If you have a craving, you may simply be hungry. Do not ignore your natural hunger signals. Eat a regular meal, and leave room for your favourite "forbidden" food at the end of a meal. Eating that food on a relatively full stomach will help to prevent you from overeating it. You may find that after satisfying your hunger, you no longer have the craving.
Starving yourself, skipping meals, or denying yourself favourite foods can lead to a rebellious binge. Instead, eat when you are physically hungry. Taste, savour, and enjoy food without guilt. Remember that by practising moderation and balance, all foods can fit.
NUTRITIONISTS SAY, "LET THEM EAT CAKE"
Chocolate, ice cream, cheesecake, pastry. If reading these words is the closest you get to "sweet treats", maybe you are being too strict with yourself. Many people suffer from an uncontrollable sweet tooth but are also trying to eat a balanced diet. The good news is that you can enjoy some of your favourite sweet treats as part of a healthy diet.
"Not true!", you say. "Sweets are bad foods!" The truth is there really are no bad foods - or good foods for that matter. A healthy diet is one that includes a variety of nutrient- rich foods and is balanced over time. Eating one piece of cake does not make your diet unhealthy, just as eating one carrot does not make it a healthy diet. If you look back over the last few days, weeks, or months and notice that you have eaten a varied diet, including foods from all groups of Canada's Food Guide To Healthy Eating, be reassured. The occasional sweet treat won't break a healthy eating pattern. If you find there were more sweets in your diet than vegetables or fruits, you may want to think about making a few changes.
The key to healthy eating is variety and moderation. Variety is important so that you can enjoy foods from all food groups. This ensures that you get all the vitamins, minerals, fibre, and energy your body needs. There is a rainbow of foods available for you to try. Next time you go to the supermarket, look around the produce department. Pick something you have never tried before. Ask a fellow shopper or the produce manager how to prepare it if you are unsure. Make your grocery shopping an adventure! Moderation means not having too much of any one thing.
Together, variety and moderation mean you can enjoy a piece of pie - just maybe a smaller slice and not every day. If your sweet tooth is acting up, feed it some fruit! If fresh produce is difficult to find in good condition, try a frozen product or fruit canned in juice. If cheesecake is one of your favourites, there's no need to give it up. Serve your famous recipe on special occasions, or try changing the recipe to reduce the fat and calories. There are lots of ways to have your cake and eat it too.
And remember - all foods can truly fit!
For more information, contact your local dietitian or public health nutritionist or surf by the web site at : http://www.dietitians.ca/eatwell
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