Saskatchewan Awareness of Post Polio Society Inc.
Well here it is summer again and we have not had any return on our fundraising appeal on assistance to send members to Calgary, the service organization did not come through. We had eight requests to date. We have been looking to other sources and will be endeavouring to once again make our needs known.
One thing that has happened is that Sharon and I have moved into an apartment from our house. Our new home is at #102-2940 Louise Street and open to all that may wish to drop by for a visit, but please phone first 343-0225. The building is accessible and our apartment is considered by the builders as Wheelchair Friendly, we will let you be the judge when you visit.
Our annual meeting being held on the Sunday did not attract the number of members that we would like to have had present. Though a quorum was present and all business was completed. Also interest in serving on the Board was weak, your new Board consists of nine members. I was once again elected as President, Don Thompson, Saskatoon, serves as our new Vice-president, Dale Schiissler, Saskatoon, remains as Treasurer, our one new member to the board Grace Doig, Saskatoon, is our new Secretary, Ken Wilson, Saskatoon, remains as Member at Large. The remaining Board Members are Jim Allonby, Regina, Anna Daughn Falkingham, Saskatoon,Pat Kjorsvik, Marshall and Hubert Woodcock, Aberdeen.
Ron Johnson, President
It's been over 40 years since the last major Polio epidemic in North America. With the advent of the Sabin & Salk vaccines most physicians will never see an acute case of poliomyelitis. In fact in North America the Polio virus has gone the way of the Small Pox virus and is found only in the laboratory setting. So for most physicians our role in this once devastating disease has changed. Now, we will only be dealing with patients who have had the acute infection some 40 to 50 years ago. What we as modern physicians need to recognize now however, is one of the common aftermaths of poliomyelitis - the post polio syndrome.
The term, post polio syndrome, was coined because a growing number of polio patients, who had long since recovered from the acute infection with variable degree of residual disability, began reporting increasing disability once again. Post polio victims began complaining of weakness, muscle atrophy and dysfunction and increasing gait disturbances. As primary care physicians we need to recognize this syndrome and have a higher index of suspicion when faced with a patient who fits this profile.
The syndrome is characterized by a number of signs and symptoms including musculoskeletal pain, weakness, wasting, gait disturbance, fatigue and even insomnia & depression. A patient may present to his or her physician with problems at the work place related to their reduced capabilities; or perhaps even family and marital stress as the result of reduced earning power. Due to diminishing stamina, the afflicted may have to experience role changes at home. Although necessary, such changes are threatening to ones self-esteem and their frustrations may be taken out on family members or friends. The threat of lost independence may present with depression, mood swings and anger. These feelings need to be explored before some of the physical problems can be addressed.
Before the possibility of post polio syndrome can be considered other causes of such physical deterioration should also be kept in mind. The differential should include multiple sclerosis, peripheral neuropathies, myopathies, degenerative arthritis and various nerve root compression disorders. Screening laboratory investigations may include C.B.C., electrolytes, urea, creatinine, TSH, serum glucose, calcium, ck, liver function test, B12 & folic acid. E.M.G. and NCT are also indicated both to rule out other neuromuscular disorders as well as being diagnostic in many cases of post polio syndrome. CT scan or MRI may be necessary in cases in which demyelinating disorders or nerve root entrapment are suspected. If other conditions have been ruled out it may be appropriate to refer such patients to a neurologist or physiatrist who has a special interest in this condition. There are a number of tertiary centres which have programs suited particularly to the diagnosis, education and rehabilitation of such patients.
The actual pathophysiology of post polio syndrome is unknown. A number of theories are abound. The most likely explanation is that motorneuron, undamaged by the initial viral insult, compensated for the loss of the thousands of these cells in the anterior horn by sprouting multiple nerve endings in the affected muscles. However these compensatory sprouts and perhaps even the overload axons supplying excessive motor impulses, eventually burn out years later. This is probably why patients who try to over come increasing weakness and disability by vigorous exercise only get worse. The overload axons only fail at an even faster rate.
Appropriate isometric exercises and physiotherapy are the mainstay of treatment but orthotics and functional braces also maybe necessary in some cases. Patient must be informed as to the need to carefully budget ones physical activity and to avoid getting exhausted physically both at work and with exercising. The role of the family physician in monitoring and reinforcing this concept is very important.
There are a number of drugs that have been tried which may have theoretical benefits but few have proven of any great benefit yet. Pyridostigmine is one such drug and studies are currently under way to see if fatigue symptoms respond to it. The appropriate use of analgesics and NSAIDs may be useful for those experiencing enough musculoskeletal pain to interfere with even moderate activity. Antidepressants at low doses for chronic pain situations or at high doses for depression should also be kept in mind. The judicious use of muscle relaxants for the treatment of severe muscle spasms may also be necessary. Other measures such as weight loss and balanced nutrition are important in maintaining overall health and this is even more important in post polio patients. Lifestyle issues such as excessive alcohol consumption and smoking need to be addressed as these substances only potentiate the problems your patient faces.
In summary, post polio syndrome is somewhat of a new concept but as family physicians, it is probably more important to recognize this disorder than acute poliomyelitis because the latter we will probably never see in this country. With an appropriate screening work up physicians can make the best referral choices for our patients and support them in their need to maintain a practical lifestyle and functional level.
CANTALOUPE, BAGELS, AND POTATO CHIPS
What do these three foods have in common? Actually, each can be part of an overall healthy eating pattern.
"All foods can fit" is the theme of the International Nutrition Month Campaign in March of 1997. Members of both the Canadian and American Dietetic Associations will be highlighting this message, not only during nutrition month but all year long.
Unfortunately, many people feel that foods are either good or bad. The good news is that even the so-called "bad" foods can - and do - fit into an eating pattern founded upon Canada's Food Guide To Healthy Eating. Long-term healthy eating habits are based on balance and moderation. Healthy eating is the sum of all food choices over time and is not based on one food or meal.
This means that chocolate bars, pop, potato chips, candies, and cookies have a place in the diet - without guilt. For some people, eating these and other similar foods produces a sense of guilt and lack of self-control. These feelings may lead to eating more of the "bad" food. So rather than enjoying a piece of chocolate cake, a feeling of frustration may lead to not enjoying it, and perhaps consuming three or four pieces.
The mass media and advertisements may also reinforce the messages of "healthy" versus "sinful" foods. Rather than buying into these outdated ways of thinking, move ahead and be a part of the progressive thinking promoting flexibility. The idea of healthy eating is designed for the real needs of today's society.
The key messages to keep in mind this month and into the following year are:
EVEN HIGH FAT FOODS CAN FIT
Fat may be one of the single most important nutrients to reduce, if the goal is the prevention of chronic diseases such as heart disease, stroke, and some cancers. Does that mean that particular foods which are high in fat and calories should be totally eliminated from the diet? Should you always choose margarine over butter, skip the potato and taco chip aisle, avoid red meat, and avoid chocolate, as well as any other higher fat, higher calorie foods? That would be unrealistic. NO foods should be completely eliminated from the diet solely because of their fat or calorie content.
Healthy eating means that all foods can fit. When it comes to fat, it's not what you eat that matters as much as how often higher fat choices are eaten and the portion sizes chosen.
Canadians should consume 30% or less of daily energy (calories) from fat. As long as moderation is practiced, any food - even those higher in fat and calories - can be included in a healthy diet.
Butter vs. Margarine
Teaspoon for teaspoon, butter and margarine contain the same amount of fat - about 4 grams. Butter predominantly a saturated fat, while margarine contains a higher proportion of unsaturated fats. Saturated and hydrogenated fats, which tend to be solid at room temperature, are known to increase the risk of coronary heart disease.
It is not necessary to avoid butter or margarine completely. Following a lower fat eating pattern means eating less of either one. So, regardless of which one you choose, just remember to use it sparingly.
Red Meat
Red meat has received bad press because of its saturated fat content. However, red meat is also a source of protein, iron, zinc, and B vitamins. Eliminating red meat from the diet is not necessary. The key is choosing leaner cuts more often, trimming visible fat, preparing it with little added fat, and moderating the portion size. Canada's Food Guide To Healthy Eating suggests 2 to 3 servings daily from the Meat and Alternatives group. Serving sizes of meat, fish, and poultry are sugested to be about 50-100 g (3 oz) or the size of a deck of cards. Also, choose a variety of foods from the Meat and Alternatives group, including legumes, eggs, and peanut butter.
Sweets
Sweet tastes are a natural part of many foods from Canada's Food Guide To Healthy Eating. But, cakes, cookies, pies, and doughnuts can have a higher level of fat and do not contribute much fibre or many of the over 50 nutrients we need daily. Sticky sweets can also contribute to tooth decay when eaten in isolation. When it comes to sweets, include them as part of your overall healthy eating pattern; but practice moderation. Consider how much and how often.
Healthy eating is not based on one food, one meal, or even a day's meals. So, NO foods should be labelled "good" or "bad". The nutritional value of any one food or meal can be balanced by choices at other meals and on other days to create an overall pattern of healthy eating. That means NO foods are off limits.
It is easy and pleasurable to include all foods. Just remember balance, variety, and moderation:
Rather than focusing on the concept of "good" or "bad" foods, apply the principles of healthy eating in you daily life. And remember - all foods truly can fit!!
For more information, contact you local dietitian or public health nutritionist or surf by the Web site at: http://www.dietitians.ca/eatwell
Norma's Independence & Disability Equipment Classifieds is a new service which lists USED disability equipment that is for sale or wanted. Norma Fairbairn, the parent of a special needs child, is well aware of the difficulty in selling used disability equipment and is hopeful this will prove a helpful service to thousands. There is a monthly newsletter which is distributed to subscribers, as well as to over 100 hospitals/clinics, and rehabilitiation centeres with a listing of all items. In addition there is a web site where ads are updated every Thursday. Anyone may accesss this site, phone the numbers listed and see what is available. Please check it out at http://www.lights.com/classifieds/ or call Norma at 306-955-0071.
(Part 1)
My Master's Thesis was entitled The Lived Experience of Chron's Disease. I myself have Crohn's Disease and found that the literature and research on the actual "experience" of living with this disease was almost non-existent. My research was based on four women who told me their stories of their "journey" with Crohn's Disease. I will share my findings with you and think that you will find them relevant to PPS. I say this because I presented these findings to a PPS conference and received feedback telling me that the journey of PPS was very similar. I have also presented my findings to other "health" groups and individuals and have come to the conclusion that all of us with a chronic health problem share a similar journey or experience.
Five themes emerged from my research. They are as follows:
1. THE JOURNEY BEGINS.
2. ON THE EMOTIONAL ROAD.
Most of us experience many emotions as we come to accept our diagnosis. These feelings often are expressed at ourselves, family, doctors (health professionals), God, friends, and anyone else involved in our diagnosis or life. Three main emotions were found to be common to most.
3. THE TUNNEL.
At this point in our journey we feel like we've entered a long, dark tunnel and are unsure of whether we will get through it or if we do, how we will emerge. This is a pivotal part of our journey as we struggle with the following factors:
4. ON THE ROAD WITH OTHERS.
At some point, on our journey, most of us emerge out of the tunnel through the help of others and ourselves.
5. THE LIGHT AT THE END OF THE ROAD After finding ourselves and others to help us develop coping strategies, we begin to find meaning in life again.
SUMMARY:
The "journey" of any chronic illness is not isolated to just the person afflicted with the disease. Through my own personal experience and "chats" with others, I have realized that those living with or closely connected with the sufferer also go on a similar "journey". We, as the sufferers, often do not recognize or appreciate this. Communication is the key to surviving physically and emotionally with a chronic illness. On that note, I would welcome any feedback, comments, or concerns about my research findings.
|
|
|
|
Your comments and questions are welcome. Please put the author's name or article title in the SUBJECT line of your message