Discussing your health with your doctor
You may wish to give your GP or other healthcare professional information about polio, Post Polio Syndrome and your situation to promote better understanding and hopefully improve your care.
We have a new 'What you need to know about my condition' form for you to present to healthcare staff, information for people going into hospital and some on medication and anaesthesia when you need it.
If you are discussing your health with your doctor, the following information may be useful for you to know and share with them.
Each person with polio is unique
- Although many people with polio were left with varying degrees of weakness, paralysis, fatigue, muscle pain, breathing and orthopaedic problems, others had limited paralysis or appeared to have made a full recovery.
- Nerve damage can be scattered throughout the body and may not always be obvious.
- Muscles may appear normal on testing until they lose more than 50% of their nerve supply so have to work harder, and even ‘good’ muscles may be substantially weakened.
It is important to discuss how polio affects you and to inform your doctors of any changes.
Physical problems can occur after having had polio
The most common include: residual weakness or muscle paralysis, musculoskeletal imbalance, poor growth, skeletal deformities, respiratory insufficiency, cold intolerance and other circulatory disturbances. There may be mobility and daily living difficulties, osteoporosis, sleep, swallowing, speech or digestive problems.
Some people may have reduced respiratory reserve, particularly if they spent time in an iron lung or have scoliosis, but are not always aware of the extent of this so appropriate assessment may be indicated.
If hypoventilation is an issue, chest infections may occur, so preventative antibiotics e.g. during winter months, and vaccination against influenza and pneumonia may be considered.
People who had polio may develop new polio-related symptoms years later. These may be a result of the original weakness and orthopaedic problems, or Post Polio Syndrome.
There may also be:
- Wear and tear due to abnormal gait or use of muscles or joints and long-term use of callipers/crutches or a wheelchair e.g. compression neuropathy/carpal tunnel syndrome.
- Degenerative arthritis of joints that have been over-stressed and repetitive motion problems such as tendonitis, bursitis and failing joints.
- Muscle weakness and excessive fatigue can also be issues.
It is important to seek advice, look after your joints to minimise further deterioration where possible, use appropriate adaptive equipment and learn to pace activities.
There may be other health conditions that require appropriate intervention
Having polio or Post Polio Syndrome does not protect you from getting other health conditions and not everything is caused by polio or Post Polio Syndrome.
Early referral can minimise further deterioration
People with polio or Post Polio Syndrome may need to be referred to a range of health professionals, including neurologists, orthopaedic surgeons, respiratory consultants or specialist respiratory units, rehabilitation consultants, orthotists, physiotherapists, occupational therapists, chiropodists or podiatrists or pain clinics.
The following may also be useful:
- Expert Patient Programmes
- Referral to the local wheelchair service or mobility centre
- A Social Services Community Care assessment
- Benefits advice
The National Service Framework for Long-term Conditions guidelines suggests that people with long-term conditions such us polio should be able to see a health professional with expert knowledge of the condition without delay.
Referral to a consultant outside the area may need to be discussed and funding approved.
We have a list of health care professionals who have expressed an interest in polio and/or Post Polio Syndrome.
Extra care and appropriate advice may be needed inform healthcare professionals that you had polio, get appropriate advice, and ensure extra care is taken when prescribing and monitoring the side effects or dosage of certain medications, anaesthesia or sedation.
As people with polio are unique, individual advice and monitoring are needed. Discuss any past problems with medications, anaesthesia or sedation (during or recovering from) with medical staff. If you notice side effects from medications, keep notes and discuss these with your doctor.
Ensure staff are also aware of the implications of polio on your needs and on any treatment (including dental), hospital visits, day surgery or longer stays. Assistance may be required, e.g. with transport to hospital, managing long distances, with even basic tasks if the ‘good’ limb is incapacitated or limbs are weakened. You may also need to discuss help at home or rehabilitation.
We have information for people going into hospital, some information about medication and a “What you need to know about my condition” form for you to share information with health care staff.
It is important not to neglect your social and psychological health
As people with polio were often encouraged to forget about polio and just get on with their lives, some can find it difficult to share their experiences years later or find the new symptoms traumatic after years of relative stability. Adapting again may take time, information and support.
Support from friends, family, professionals and the Fellowship helpline and peer support network may help people come to terms with changing health or increasing disability. Assessment and treatment for depression may sometimes also be appropriate.
General health advice is also important
This might include eating a healthy balanced diet, keeping warm, maintaining a healthy weight, and not smoking.
Polio vaccination
This is as important to people with polio as for the general public, especially when travelling to ‘at risk’ countries. There are three types of the poliovirus and infection with one does not give immunity to the others.