Lincolnshire Post-Polio Library - A Service of The Lincolnshire Post-Polio Network
A practical approach to the late effects of Polio
Charlotte Leboeuf

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13 WHAT SHOULD I DO IF I ALREADY HAVE THE LATE EFFECTS OF POLIO?

You are the person who has the main responsibility for your own health. It is important that you are well informed of the circumstances surrounding the late effects of polio and the different strategies that you may use to combat this condition.

As with most other chronic conditions there is no single cure. You will need to learn how to manage it. Very little is known about the treatment of LEOP, but it is generally accepted that the symptoms can be managed quite successfully through energy conservation.

ENERGY MANAGEMENT

This is about striking a balance between rest and activity. It usually entails some or all of the following:

-   reducing the workload (i.e. the activity level and the time spent);
-   resting and pacing;
-   making life-style modifications;
-   making use of assistive devices where appropriate.
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If you need to make life style changes, you may resent doing so, since it may involve giving up some enjoyable and important activities which are part of your independent life. It may be very difficult to cut down on activities which you previously regained following the initial polio infection. It is, however, important to keep the final result in mind. The sacrifice may be worthwhile, if by cutting down on some activities you improve the quality of your life in other important areas.

You will need to take a systematic approach to your energy management. This outline may be of help:

-   Objectively review your routines, at home and at work.
-   Order your activities according to importance.
-   Establish how you can make suitable changes to your work routines in order to conserve energy.
-   Plan and space unavoidable activities which can lead to fatigue.
-   Plan for recovery time, rest and recreation.
-   Assess the need for energy saving equipment. Independent Living Centres (see chapter 15) can give you advice and ideas in this area.
-   Make improvements to your environment which result in decreased energy expenditure (and if possible maintained independence).

Examples of changes to your work routines which could assist with your independence while saving energy are:

-   Spread washing on a clothes horse to dry, instead of pegging on a line.
-   Prepare extra food and freeze for a busier day.
-   Arrange help for heavy tasks, such as house cleaning, to remove the pressure from you and help you save energy for more pleasurable activities.
-   Plenty of shallow shelves are easier to use than a few deeper ones.
-   Use sitting-down breaks for lighter hand tasks, such as shaving, nail grooming, writing, peeling vegetables.
-   Have supermarket shopping delivered.

The concept of energy conservation can also be applied to other areas.

WEIGHT CONTROL

Your muscles and joints will have to work harder if you are overweight. It is a good idea to cut down on fatty and sweet foods and to increase your fruit and vegetable intake. Also be careful with what you drink.

EXERCISE AND FITNESS TRAINING

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Inactivity leads to "deconditioning" which in turn causes weakness and fatigue. Physical activity is considered an essential component of a healthy life style. It protects against diabetes, heart disease and osteoarthrosis (=degenerative joint disorder). It also has a positive effect on digestion and weight control.

The fact that too much activity is also thought to be a cause of weakness and fatigue in post-polio muscles makes it important to balance activity and rest.

If we accept that physical activity is good for the health we must also accept that there is an upper limit when "good" turns into "bad". You are the only person who can tell where this borderline is. When you exercise, it is important that you stop just as (in fact, just before) you start to feel pain, weakness or increased fatigue.

The following method has been tested on people who experience the late effects of polio and was found to increase the general level of fitness without causing any harm (27-29):

RELAXATION AND STRESS MANAGEMENT

Unless the quality of rest is good, you will not benefit from your moments of non-activity. You may want to learn about and concentrate on relaxation and stress management.

SMOKING AND OTHER SOCIAL DRUGS

Other important factors that you can control are smoking and the use of alcohol and other drugs. Smoking will have a negative effect on your lungs and cause further weakness and fatigue. Alcohol and other social drugs have a deleterious effect on balance and also suppress the central control of breathing. If balance and respiration are problems, it is best to avoid such substances.

ENVIRONMENT

When you plan your environment for energy conservation, it is important that you consider both ease of use and safety. You can consult the Australian building requirements regarding design for access and mobility (Australia Standard 1429, which can be obtained from the Standards Association of Australia). Local Government building surveyors and architects can also advise you, but remember that it is your individual needs which should dictate your own particular solutions.

TECHNICAL ASSISTANCE AND PRACTICAL ADVICE

Since the range and severity of complaints with the late effects of polio vary, it is difficult to provide information which is of interest to all readers, relating to technical and other assistance.

The following information contains some specific examples which may or may not be of practical use for you. It is hoped that they may give you some ideas on how to make life easier.

A visit to the Independent Living Centre in your state (see chapter 15) will allow you to inspect and try out various types of equipment and aids. The staff will provide you with information and ideas on how to improve your environment in order to save on precious energy.

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Copyright The Lincolnshire Post-Polio Network 1997 - 2010.

This document comprises an index, introduction and sixteen other sections or subdocuments. Permission for printing copies is granted only on the basis that ALL sections are printed in their entirety and kept together as a single document.

Document preparation: Chris Salter, Original Think-tank, Cornwall, United Kingdom.
Created: 30th December 1997
Last modification: 20th January 2010.

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