A practical approach to the late effects of Polio
Although you will be able to look after yourself to a great extent, you may, from time to time, require professional assistance from people with particular expertise and skills. It is important that you approach these people with a clear concept of what you want from them. It will probably also help if you can provide clear information relating to your symptoms and concerns. Most health professionals would want to know:
|-||what your health problems are;
|-||whether your condition is getting worse, is stable or
comes and goes;
|-||how long you have had your symptoms and problems;
|-||if there are any aggravating and relieving
Your past medical history is also of interest, You will need to have explored your past in relation to your polio infection, the extent of the disease and the level of maximum recovery (see chapter 11).
Remember that your previous polio infection is not the only thing which needs to be mentioned; you are not immune to other conditions just because you once had polio!
It is also important that you allow your health practitioner to become familiar with the late effects of polio. If (s)he has not already heard of this condition, it may be helpful to see to it that (s)he obtains a (free) copy of the book on the late effects of polio (see chapter 15).
If you feel that your practitioner fails to listen to your story, that (s)he does not perform a clinical examination or has the diagnosis ready at the onset of the consultation, you may consider seeing somebody else for proper assessment.
The following alphabetical list of professional groups may be useful to you. This list is not all-inclusive, but gives you some ideas of where you may obtain assistance.
If you experience pain and/or stiffness in muscles and joints, chiropractic treatment may be of assistance. However, joints which have excessive movement due to damaged ligaments or insufficient muscle support, or very inflamed areas will probably not respond to manipulation or massage, in fact they may get worse.
Chiropractors can also assist you with advice on posture to prevent undue wear and tear in your daily activities.
Depression is a common occurrence when important changes to lifestyle are needed. Fatigue and financial concerns, due to an inability to work at your previous pace and capacity, may result in interpersonal strain. This may put marriages and friendships at risk.
Counselling may be of assistance for people who have problems coping with the late effects of polio and can involve carers. In fact, the whole family may need to talk over the situation on neutral ground.
Family (marriage) counsellors, psychologists and social workers are some professionals who are skilled in this area.
A dietitian may be consulted to help manage weight problems.
You will need a good medical practitioner who gets to know you and your particular circumstances, to whom you can turn for assistance with everyday problems, such as chest infections, fatigue and pain control.
You may also need various specialist assessments, such as of your muscles and nerves, degenerating joints, breathing capacity, sleep apnoea, speech and swallowing.
You may need to be referred to an orthotist (for orthotic support), a neurologist (for neuromuscular assessment), an orthopaedic surgeon (for surgery) or a lung specialist.
Your doctor will also be able to advise you on the need for vaccination against influenza and pneumonia and the use of prophylactic antibiotics during the winter months.
In particular, it is essential that you see your doctor with any chest infections. In all such cases, sputum specimens and/or throat swabs should be taken to guide the choice of antibiotic therapy.
If respiration becomes a problem it is necessary to seek assistance. Some people require respiratory assistance occasionally (e.g. following physical efforts or during chest infections). Others need it regularly, but for short periods, whereas some need it more or less constantly.
You may have memories of or have heard about the ventilators of the past. The iron lung and the rocking bed were the most common. Today there are many lighter devices, which either provide help to breathe out ("negative pressure ventilators") or to breathe in ("positive pressure ventilators"). Previously, a tracheostomy (=cutting a hole into the windpipe) was necessary with positive pressure ventilators. Recently nose or face masks have become available.
Specialist advice must be sought if you have respiratory problems.
An occupational therapist can help you look at alternative methods of living an energy efficient life. (S)he can assess you at work and at home in order to suggest equipment and methods which suit your particular needs.
An orthotist (=formerly "splint maker") can assess your needs for and provide you with new and/or upgraded orthotic support (=braces, special footwear, corsets etc.). Unequal limbs, hyperextended knee, scoliosis, drop foot and paralysed limbs are the most common types of residual problems which require orthoses. The purposes of orthoses in post-polio management are to control motion and to support joints which have lost their normal muscle protection. Orthotic supports may be essential for your mobility.
If you have mild or moderate residual problems you may not have used any orthoses since the original infection (if at all). With increasing weakness you may find that your joints are unable to withstand the daily burden of carrying you around. In such cases, it is important to seek assistance before irreversible damage has occurred to muscles and joints.
Even if you are using orthotic supports you may be unaware of the present range of equipment. Ask your orthotist for advice.
If your equipment causes pressure sores and ulcers you need to discuss this with your orthotist, since it is important that it is comfortable at the same time as providing adequate support.
You may need to see a physiotherapist to assess your muscle weakness and to design a suitable fitness program. Water exercises are best done under supervision for maximum benefit and safety reasons, particularly if you have fairly severe residual problems from polio. Some physiotherapists can assist in this area.
Physiotherapists can provide posture advice and they may liaise with the orthotist if your orthotic equipment needs to be modified or if a new area now needs support.
If you experience long-term respiratory infections, you may need to learn some respiratory exercises and get help to "empty" your lungs.
Massage, mobilisation and manipulation are also provided by some physiotherapists for pain relief in muscles and joints.
Some physiotherapists have an interest in stress management and relaxation training which you may find useful.
If your feet are awkwardly shaped due to polio, you may find it helpful to have them cared for by a podiatrist. If circulation (or sensation) is a problem, it is particularly important that you do not cut and chop at corns and nails, since you may cause infections and slow-healing lesions.
Your podiatrist may also advise you on shoes and foot support. It may be particularly important that your shoes provide adequate support and comfort.
If you wear special boots for prolonged periods, fungal infections may be a problem. Your podiatrist may be able to assist you with this as well.
© 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
Think-tank, Cornwall, United Kingdom.
Created: 30th December 1997
Last modification: 20th January 2010.