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The Survivor Newsletter: Spring 2000

Empowering the Polio Survivor

A Key to the Management of the Late Effects of Polio

By Professor Elizabeth Dean.

Reprinted with permission from
PPN (NSW) Newsletter, issue 43—December 1999.

Quality of life is not merely the absence of disease or symptoms but consists of one’s ability to fulfil roles in life and perform tasks and activities of daily living, as well as psychosocial aspects of well-being. The residual or late effects of poliomyelitis can vary significantly among survivors ranging from invisible signs to an individual who has been on an iron lung for the past 50 years. Similarly, the quality of life is different for everyone.

The key to successful management of the late effects of polio is empowerment. Empowerment is the capacity of individuals to help themselves attain a quality of life. Empowerment is achieved with knowledge regarding the appropriate management of the late effects of poliomyelitis and from the support of family and friends. Survivors of poliomyelitis first have a major responsibility in understanding the late effects of polio and learning to listen to the messages from their bodies. These messages presenting in the form of fatigue, weakness and discomfort, have often been suppressed and ignored. Some individuals take years to learn to confront new symptoms, as denying their presence over the years has actually enabled them to push on. Second, survivors must select health care providers who are committed to listening and working towards identifying the best approach towards management of the late effects of their disease. This partnership requires that the survivor communicates effectively with the practitioner, implements suggestions, provides feedback about the effects of the recommendations, and tries modifications. The health care provider must be guided by the survivor’s input as to the appropriate interventions and their priority, and to follow the survivor over time to ensure that treatment is having a maximal long-term as well as short-term effect. Third, survivors have a responsibility to inform their families and friends about what they can or can not do in an assertive manner without feeling they are letting their families or friends down, or even themselves.

Living Healthy:

We all abuse our health to some degree through our lifestyles. Health is priceless and warrants being protected for our own benefit as well as those close to us. Even though the precise mechanism for the late effects of polio has yet to be discovered, "living healthy" and minimising the abuses our lifestyles inflict can only be positive and minimise the impact of the late effects of the disease. For optimal health and reduced ravages of the late effects of polio:

What works in the management of the late effects of poliomyelitis: The role of exercise, rest, pacing and orthotics:

Professor Dean’s research has shown that exercise needs to be prescribed individually just like medication. Some individuals can benefit from a modified exercise prescription, whereas this is not indicated for others. These individuals may already be experiencing sufficient exercise completing their activities of daily living. Even this may be excessive for some individuals who may need adaptive aids and devices to minimise further the physical demands they experience in the course of the day. Survivors of polio are urged to have a thorough examination and testing by a physiotherapist to establish the balance of physical activity/exercise and rest in their day currently, to what extent this balance should be altered to achieve maximal health and function; and if so, how. Survivors have a central role in working with their physiotherapists so that they obtain a clear understanding of survivors’ symptoms, what makes them worse, what makes them better, and how quickly do the symptoms appear, and how quickly do they resolve. This means that survivors must be ‘in touch’ with themselves physically to provide this critical information, and minimise the risk of making things worse by ignoring the body’s warnings.

Orthoses:

Many survivors of polio have unpleasant recollections of having to wear orthoses and braces as children and continue to resist wearing them as adults.

Certainly not all survivors have to return to these or need them at a later date. Professor Dean stated that in her clinic, orthoses are often recommended before they are absolutely indicated. A primary consideration in their recommendation is the safety of the individual. They also can provide effective intermittent support or total support, such that biomechanics and posture are improved. This in turn, can reduce oxygen and energy cost, maintain alignment, hence reduce the oxygen and energy cost of certain activities and minimise deformity. The science of orthotic and brace construction has improved considerably in recent years and considerably more thought has been given to their aesthetics. There is more to choose from and more options to try out. Sometimes, something as simple as a shoe-raise or better supported shoes can do the trick in terms of improving safety and support during walking.

Technological Advances:

Like orthoses, technological advances have been made over recent years in aids and devices to keep you safe, assist around the house, assist with activities of daily living, help get out of chairs and off toilets, up and down stairs, and wheeled chairs and scooters for getting around. Look around to see what is available. Don’t be afraid to spend the money—your independence, mobility and quality of life is the most important priority. Tell manufacturers what you need and what you like and don’t like about their devices. They really want to know so they can improve the design and appeal of their products. Wheelchairs and scooters are ideal for assisting with maximising your endurance when you have to cover large distances. Going to the shopping mall for example is tiring enough, and without assistance may leave you no energy to shop and enjoy the company of your shopping partner. These devices can be extremely helpful in allowing you to maximise your ability to perform your activities of daily living and to socialise and get out of the house. Make use of them to the fullest.

What about vitamins and supplements?

The vitamin and supplement business is a multi-billion dollar industry in the industrialised world. Rather than line the pockets of these manufacturers, you’d be better served by assuming a balanced diet every day and extracting your vitamin and mineral needs from wholesome foods, and using the money you save for an assistive aid or device. If your diet is full of fresh fruit and vegetables, whole grains and beans, there is likely little reason that you require supplements. In the long run, the quality of the vitamins consumed through wholesome foods is better because it is in combination with other nutrients, and is better suited for extraction by your body. Also a regular daily diet of wholesome foods will ensure your diet is optimal, and does not end when the ‘vitamin bottle finishes’! Finally you’ll have saved lots of money.

What about dieting? (Diets don’t work!)

Weight control is an important concern for survivors of poliomyelitis. Weight control results from a combination of a quality balanced nutritional regime and exercise. Clearly, the type of exercise that is best for weight control is often not ideal for a survivor of poliomyelitis. So then, how does a survivor of polio loose weight? First, don’t go on a calorie restriction diet or follow fad diets of any kind. You’ve heard it before, but once again, ‘Dieting makes you fat’. Be as physically active as possible given your symptom thresholds and avoid overdoing it. Remember that any activity burns calories. Consult your physiotherapist for the optimal level of physical activity or exercise for you.

With respect to maximal health through nutrition, the guidelines are simple, easy to follow and are guaranteed. Fats and oils are calorie dense and health hazards—they are implicated in many chronic health problems. Reduce the fat in your diet as much as possible. If you need to cook with oil, try using oil sprays which significantly limit the amount of oil consumed. We have become too accustomed to reaching for the butter dish or margarine when in fact these are often unnecessary sources of fat. Avoid fat and sugar filled cakes and pastries. In baking, you can use apple sauce or other fruit sauces instead of fat to add moisture. Vegetable oils, although preferable to animal fats, are still fat. Try water-based cooking as a refreshing and healthier alternative. Increase the fibre through fresh fruits and vegetables and introduce more beans and whole grain products. White breads, even when enriched, deprive you of many of the best nutrients contained in cereal products. The browner and coarser the bread, the better. Reduce or avoid sugars and sweeteners wherever possible. Computer with 20 to 30 years ago, most people have restricted their intake of meat, particularly red meats, which as been a wise health move. In fact, many families now consume at least 2 or 3 vegetarian evening meals a week. These simple guidelines will guarantee you better health, very economically!

There is scientific evidence to support that when we eat, most of our calories should be commensurate with our metabolic needs throughout the day, that is, most at breakfast and least in the evening, and a medium amount at lunch, we metabolise our ingested foods more efficiently, have better weight control and better availability of energy. There is also evidence that small portions of food eaten more frequently is effective in ensuring an on-going supply of nutrients and energy throughout the day. This is exemplified in the glucose intolerant person or diabetic.

What about swimming and aquatics?

Water exercise and not just swimming are both excellent forms of activity. If getting in and out of the pool, however, are physical challenges for you, inform your public pool officials about your needs. You can be assured that you are not the only one in your community who would benefit. You will help make the pool not only more accessible for yourself but also to many others. Remember you do not have to be a swimmer to derive the multitude of benefits from water exercise.

How can I communicate more effectively with my doctor?

Assertiveness training is not just a feminist issue. There are times when all of us reflect on a difficult situation in which we did not clearly communicate our

needs or wishes with the end result that our needs were not met. There is not more important time to communicate your needs clearly, than in discussing your health concerns with your health care providers. All too often, we are more effective in communicating with mechanics about servicing our cars than we are in communicating our needs to our health care providers. Our health is too important not to be heard. By not communicating clearly, your health care provider cannot offer the best possible ideas to you. Many health care providers are only now learning to communicate with their patients better and to listen. Being minimised or invalidated by anyone is a demoralising experience, but it is especially detrimental when it is your health care provider – someone to whom you have turned in a time of need. With other professionals, we are more likely to be direct, clear, follow up with specific questions when things are unclear, and say ’no thank you’ when we are not pleased with the service, recommendations or quote. There may be times when you need to say ’I recognise that you are respected for your technical skills in patient care, however, my health is important to me and I need a practitioner with whom I am able to communicate and who I believe listens to me and offers suggestions based on my insights about my own condition’.

Survivors of polio have worked hard to get into and stay in the mainstream of society. This in many cases has been at a cost, particularly in the presence of the late effects of the disease. Family and friends have certain expectations of you and may fail to consider your challenges with respect to fatigue, weakness and discomfort. In part, you may have unconsciously contributed to their perception that you are not as tired or in as much discomfort as you are, by minimising these complaints when they inquire. You are doing yourself a great disservice by contributing to their belief that you are doing fine when you are not. You are denying it to them, but more importantly to yourself. This is not a matter of being weak or burdening others with your concerns. We all have limits—know yours and let others take responsibility for theirs. You’ll be surprised at how people will respond. Most will be delighted that you are more vocal because they know, and won’t have to guess, about your need to rest, or not doing this today, but on Saturday when you have fewer things going on, or having lunch together rather than dinner, so you will enjoy it more because you have more energy. You will enjoy your new-found freedom and control, and not having to feel like you are compromising yourself.

What should I do about swelling in my legs?

Swelling in the legs is a common complaint of Polio Survivors. Muscles act like a pump. When they contract, blood returns to the heart after being pulled downwards by gravity. Legs with muscle weakness or paralysis have less capacity to perform this pumping action, either when you are walking or when you contract these muscles in the sitting position. Swelling in the legs can be a serious problem for several reasons. First, engorgement of tissue with fluid can be uncomfortable, making clothing fit difficult; it can become chronic and it is important to bring it to your doctor’s attention.

Here are some things to try, to reduce leg swelling after your doctor has ruled out other causes:

If you are able, move your ankles up and down when you are sitting, and bring your knee up towards your chest, these movements will be helpful.

If you are unable to actively move your leg, a family member or friend can passively move the leg for you, so your hip and knee bends; this is best done when you are lying down so the fluid can move towards your chest cavity more easily. The leg should be moved in a rhythmic fashion.

Put your feet up whenever you are sitting down. Don’t be proud—just ask for a stool or another chair. Before long, people will be anticipating your request and have one waiting for you when you sit down. When you lie down for a rest or sleep, put pillows under the leg so that it is higher than your heart.

Have a family member massage your leg so the fluid moves up towards your heart. Again, this is best done when you are in a lying position so the fluid can move towards your chest cavity more easily. This massage should not be vigorous as tight, swollen skin is more at risk of abrasion, breaking down, and inflammtion and cellulitis. The leg should not be massaged if skin breakdown or redness of the skin is present.

Avoid restrictive clothing including corsets, tight underwear, tight socks and shoes.

Consider support stockings (for both men and women) that extend up over your knee. If you have extensive swelling, the stocking will have to go up to your groin, otherwise ‘ballooning’ of the fluid will occur where the stocking ends. These stockings must be properly fitted by a physiotherapist to ensure that they are an appropriate fit, they are not too tight or too lose, and to teach you how to apply it so it does the job properly and does not ruch when you wear it; when to wear it and how to take care of it. It is important that you wear it for a period of time, then take it off for a period of time and then reapply it.

Passive mobilisers of the legs are available as well as what is called an intermittent pneumatic stocking. These however are not typically available to the public but may be used by a physiotherapist if your swelling is extensive or does not resolve with the suggestions above.

If you are diabetic or have glucose intolerance, your skin is even more at risk of breakdown and infection., your doctor should be following you closely. Both your doctor and physiotherapist should make recommendations regarding foot care.

This is an overview of Professor Dean’s presentation to members of the Post-Polio Network (NSW) in October 1999. She is on faculty in the School of Rehabilitation Sciences, Faculty of Medicine, University of British Columbia, Canada. She is Head of the Post Polio Clinic at the University of British Columbia. Her research focuses on exercise, rest and sleep in survivors of poliomyelitis.

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