Effective assessment needs to review the patients’ history and status for all common PPS symptoms and should take into account their early experiences and how these may have influenced their response to new and/or increasing symptoms, their psychological wellbeing and the symbolic meaning of assistive devices.

Regular reviews are recommended to monitor symptoms and identify any progression of the condition

A comprehensive guide to management and treatment can be found in Post Polio Syndrome: A guide to management for healthcare professionals, but some key suggestions and recommendations are provided below from the Quick Reference Guide.

Energy management techniques:
Can alleviate the symptoms of neuromuscular and general fatigue and reduce pain. Referral to a specialist physiotherapist or occupational therapist with experience in managing neurological conditions is recommended for assessment and training in these techniques:

• Pacing activity
Effective in reducing neuromuscular fatigue and pain and may improve performance for some.

• Energy conservation
Adapting, simplifying and prioritising daily tasks can preserve energy and avoid neuromuscular fatigue and pain.

• Aids and appliances
These can help in energy management. PPS patients may need encouragement to use aids, which may remind them of the original Polio.

An orthotics review by an experienced specialist can help reduce overuse and misuse and reduce energy cost of walking by optimising orthoses and footwear. Optimised orthotics may help reduce falls.

Respiratory management:
For confirmed respiratory insufficiency, due to weak respiratory muscles or scoliosis, respiratory support in the form of non-invasive ventilation, normally bilevel positive pressure (BiPAP), usually only at night, is the recommended treatment. Continuous positive airway pressure (CPAP) is used for obstructive sleep apnoea. If secretion retention is an issue, a respiratory physiotherapist can advise on positions of treatment and also devices such as cough assist that might be useful in the case of a persistently weak cough.

Exercise and physical activity:
Once good energy management is established, these can be considered under the guidance of a specialist physiotherapist with experience in management of neurological conditions, to strengthen muscles where possible and help improve cardiovascular health.

Caution: safe effective exercise for people with PPS requires an
individually tailored non-fatiguing, pain-free programme and careful
monitoring to avoid overuse.

Pharmacological management:
As there is no medication proven to reverse the progress of PPS, pharmaceutical interventions are aimed at alleviating symptoms such as fatigue, pain and poor sleep. To date none have been proven to reduce the fatigue and neurological weakness of PPS. Some medications can alleviate pain and are used after energy management techniques have been tried.

Side effects of some medications can worsen PPS symptoms such as increased weakness, fatigue, respiratory depression or muscle pain/cramps.

Anabolic steroids are not recommended to improve muscle bulk as the risks due to side effects greatly outweigh the potential benefits. Metabolic stimulants such as L-carnitine and co-enzyme Q10 have been studied but not been proven to be effective.

The efficacy and safety of intravenous immunoglobulin is currently the subject of a multi-centre randomised controlled trial.

As with other chronic diseases, pneumococcal and influenza vaccinations are prudent to offer given the respiratory issues already outlined.

Psychological therapies:
May be helpful in treating symptoms such as depression and anxiety. They may also enhance the efficacy of physical interventions by promoting behaviour change and improving the ability to cope with physical symptoms.

Nutrition and weight management:
Dietary advice to optimise nutritional status may also support functional status. Weight loss may help reduce neuromuscular fatigue and pain, taking account of probable low proportion of lean mass and low mobility. Underweight may be due to poor diet, swallowing issues or difficulty shopping/ cooking and may impact PPS symptoms.

Caution: if advising exercise, see the advice on a safe effective programme.

Other conditions:
Management also needs to include treatment of other conditions which occur more commonly in Polio survivors such as osteoporosis and peripheral neuropathies. If a PPS patient smokes, smoking cessation advice and support can prevent worsening respiratory function and vascular complications.

As PPS is a progressive condition, regular review, ideally once a year, is essential to identify increasing muscle weakness, fatigue and/or pain and to adapt the individual’s management programme accordingly.

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