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Polio - Post Polio syndrome(PPS)

 

Condition
Polio - Post Polio Syndrome (PPS)

Class
Immune System

Description
Polio, also known as poliomyelitis, is an infectious disease caused by one of three types of virus. The disease used to be the most common cause of paralysis in young children, and so was often called infantile paralysis. (See separate article on polio)

Although Europe has been declared polio-free since 2002, there are approximately 120,000 people living in the UK who survived earlier polio epidemics; many having led active and independent lives. However, years after the initial attack of polio, around a quarter of these people are experiencing new polio-related symptoms, known as the Post Polio Syndrome (PPS) or the Late Effects of Polio (LEP).

Causes
PPS may be triggered by a number of conditions, particularly those associated with a period of immobilisation, or with falls or surgery. It is not known exactly why PPS develops, but it is thought that, in compensating over the years for the initial damage caused by the polio virus, the unaffected muscles and nerves may deteriorate or 'burn out' in later life, so causing the symptoms of PPS.

Symptoms
PPS can occur in people who had non-paralytic polio and paralytic polio. It is not age-related but appears to depend upon how seriously the person was affected by the first attack of polio. Symptoms, which may develop slowly or suddenly, include:

  • Lack of strength and endurance, with increased muscle weakness and fatigue
  • Pain in muscles and joints
  • Respiratory difficulties (particularly in those who spent some time in an iron lung ventilator)
  • Problems with swallowing and sleeping

Treatment
There is no specific treatment for PPS, but lifestyle changes can help alleviate symptoms and maintain independence. (See Living with PPS below)

When to see your pharmacist
If you have been diagnosed with PPS, your pharmacist will be able to put you in touch with some of the specialists such as physiotherapists and chiropodists who can help.

If you think that your medicines may be making your symptoms worse, ask your pharmacist to review your medication. Some drugs can affect muscle activity, for example benzodiazepines, or can reduce exercise endurance, for example beta blockers. Your pharmacist will be able to identify any drugs that could be having these effects and, if this is the case, you will be advised to see your doctor.

When to see your doctor
If you, or a member of your family, has had polio and start to develop any of the symptoms described above it is important to go and see your doctor. The earlier your condition is recognised and your symptoms managed, the better the chances of your symptoms stabilising.

If your doctor suspects PPS, you will be referred to specialist who will perform a series of investigations and, in the absence of any other clinical explanation for the symptoms, will confirm a diagnosis of PPS. Although there are no specific drug treatments for PPS, the specialist will coordinate other specialists to help with your particular problem. A referral to any of the following may be recommended:

  • Orthopaedic surgeon
  • Rehabilitation consultant
  • Disability medicine consultant
  • Physiotherapist
  • Respiratory medicine consultant or specialist respiratory unit
  • Neurologist
  • Occupational herapist
  • Chiropodist / Podiatrist
  • Psychologist
  • Counsellor
  • Pain clinic

Living with PPS
If you have been diagnosed with PPS, some changes in your lifestyle may help ease symptoms and allow you to remain as independent as possible. Properly managed, PPS can stabilise or progress only slowly.

It is important to keep mobile, so preventing further muscle wasting and stiffening of joints, particularly after surgery and any illness which results in periods of immobilisation. However, over-activity causing undue fatigue can weaken muscles further. Strike a balance between rest and activity. Activity should, therefore, always be followed by periods of rest.

Maintain your general state of health. If overweight, try to shed a few pounds. If necessary ask your doctor to put you in touch with a dietician for dietary advice. If you smoke, make every effort to give up.

Meet with an occupational therapist to assess any aids that you are currently using such as wheelchairs, walking sticks or footwear. These aids may need to be adapted or you may require new ones. If you are experiencing breathing difficulties or disturbed sleep, simple ventilators for regular use at home at night are now available from specialist centres. Information on facilities and help available for people with disabilities is always useful.

Do not struggle on alone. It can be difficult for you and your family to come to terms with PPS, especially if you have been reasonably active since you had polio. Speak to your doctor about putting you and family members in touch with specialists who can provide social and psychological support.

Take extra care if taking medicines such as benzodiazepines that can affect your muscles. If you muscles are weakened by these drugs, there is an increased risk of stumbles and falls. Remove trip hazards such a rugs and wear properly fitting slippers around the home.

Further information
The British Polio Fellowship is the largest national charity for people in the UK with polio and PPS. It actively campaigns for those affected by the disease and provides information, welfare and support to help people live full and integrated lives.

The British Polio Fellowship
Eagle Office Centre
The Runway
South Ruislip
Middlesex
HA4 6SE

Freephone: 0800 018 0586
Email: info@britishpolio.org.uk
www.britishpolio.org.uk

Reviewed on 20 April 2011


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