Post-polio Syndrome

Understanding and living with Post-Polio Syndrome

Post-polio syndrome occurs in people who have recovered from Polio in the past and causes physical symptoms. Treatment and mobility aids can help to manage these symptoms helping to maintain independence and a fulfilling lifestyle.

What is Post-Polio Syndrome?

Post-Polio Syndrome is a neurological condition that can occur in people who have had Polio. Although Polio was common in the 1940-50’s it is very rare now, however some polio survivors have developed PPS many years later. It is often difficult to diagnose as symptoms can appear slowly and are often mistaken for other conditions.

Research suggests that it more commonly affects women and seems to develop more quickly in people who had polio during the epidemic in the 1950’s. Early studies showed evidence of PPS, but it wasn’t until the 1980s that doctors began seeing more people, that had had Polio, developing increased weakness, fatigue and pain in their bodies. For a long time neither patients nor doctors were looking for a connection with Polio and as a result, little research was done into any longer-term effects. By the nineties, enough evidence was found that suggested these new symptoms were linked to Polio.

Symptoms of post-polio syndrome can be a new or increasing weakness, muscle loss, pain and fatigue, joint pain, cold intolerance, breathing and swallowing problems. There is currently no single test to diagnose PPS and doctors have to rule out other reasons for the symptoms before diagnosis.

A number of factors will be considered before a diagnosis of post-polio syndrome such as:

• Do you have a confirmed history of Polio?
• If you don’t know if you had Polio, did you ever come into contact with anyone who might have had it?
• Did you have any physical signs of having had Polio in the past?
• Have you had a period of recovery from Polio when your condition has not changed for a long time?
• Are you experiencing new or increasing weakness, abnormal muscle fatigue or a new loss of muscle?
• Is there pain in your joints?
• Are you having problems with breathing, sleeping, swallowing or not being able to tolerate the cold?
• Is there another medical explanation for these symptoms?

A diagnosis may be difficult as many healthcare professionals know little about PPS or even Polio, so referral to a specialist consultant with this knowledge may be necessary for diagnosis and advice.

Treatment and support for post-polio syndrome

While there is currently no cure for Post-Polio Syndrome, treatment focuses on the management of symptoms. People who are diagnosed with the condition are usually referred to a team of specialists who can help them to manage symptoms and maintain their quality of life. This team is known as a multidisciplinary team (MDT) and can include:

• A neurologist who specialises in problems affecting the nervous systems
• A respiratory consultant who helps with problems breathing
• Rehabilitation medicine consultant that specialises in complex disabilities
• Physiotherapist to help improve movement and coordination
• Speech and language therapist to help with swallowing difficulties
• An OT to help improve skills for daily living
• Mobility specialist who will advise on suitable mobility aids such as walking sticks, wheelchairs and specialist dining aids.

Some of the main treatments can include rest and exercise, painkillers such as paracetamol, ibuprofen or stronger anti-inflammatory drugs. Mobility aids such as braces and protectors that can help weakened joints and muscles, improve posture and provide support. Other treatments can include machines to help with breathing and sleeping problems, maintaining a healthy lifestyle and also therapy for managing the psychological impact of the condition.

More information and help

If you have or care for someone with post-polio syndrome, you can find more help and advice from organisations and charities below.

• British Polio Fellowship