Polio Survivors Network
Polio Survivors Network (PSN) is a support network for Polio Survivors experiencing and coping with the effects of Post Polio Syndrome. [PPS]
PSN are Polio Survivors (not doctors) who, after years of stable functioning following recovery from Polio, are experiencing new deterioration. In most cases these problems had been gradual and medically noted (most often not explained) over many years. Until May 1995 we knew nothing about PPS but our Founder heard the term ‘old polio’ relating, she was told, to breathing problems being experienced by people who had been in iron lungs. She had spent seven years of increasing new problems that were being labelled as ‘all in her mind’ so in November 1995 she asked a Consultant could Polio be her problem? The answer that she presented the same symptoms as another patient who had had polio as a child, led her to start searching for more information.
In February 1996 radio broadcasts and local news items started to bring together Polio Survivors in Lincolnshire. In late July 1996 –
A couple of years ago the Committee decided that having the county name Lincolnshire in our title was restrictive when discussing issues with NHS departments in other areas of England. To better reflect the spread of our membership we became Polio Survivors Network.
Our Intentions
To collect, collate and provide Polio and Post-
To represent the concerns of the members of the Polio Survivors Network and their families
To promote understanding of the experiences of those living with the long term effects of polio and post polio syndrome among health and social care professionals, service providers and the general public.
To encourage health and social care service providers to include polio survivors and families in the consultation and planning of local services.
To promote the provision of good quality and appropriate multi-
To promote the provision of good quality information that enables and empowers Polio Survivors and their families to make decisions about their daily lives.
To promote better research of treatments, therapies, equipment and quality of life issues that concern Polio Survivors and their families.
By
- Consulting the members of the Polio Survivors Network to identify their concerns
- Raising awareness of Post Polio Syndrome
- Encouraging working relationships between our members and health and social care services at national and local levels
- Educating and informing
- Networking with others who share similar concerns.
What is PPS?
Post Polio Syndrome (PPS) is a neurological condition that can occur in people who have had Polio. After a long time without any significant change in their condition, people may develop new symptoms of increasing weakness, stamina problems, fatigue and pain.
PPS is often difficult to recognise as symptoms may develop slowly and may be mistaken for other conditions. Before making a diagnosis of PPS it is important to exclude any other conditions that could explain your symptoms.
What else do we know about PPS?
PPS can occur at any age and can be an issue for people who had either paralytic or seemingly non-paralytic Polio.
Research on who is most likely to experience PPS is not always clear and can be contradictory. Findings vary, but have shown that PPS may develop in a significant number of people with Polio.
It is suggested that PPS may affect more women than men.
People who have had fatigue or pain in the years since they contracted Polio, or where physical activity has caused extreme tiredness and pain, seem to be at increased risk of developing PPS, or may already be experiencing it.
PPS also seems to develop more quickly in people who had Polio during the epidemics of the 1950s.
What are the symptoms of PPS?
Symptoms may include the following:
- breathing problems
- swallowing problems
- muscle loss
- new or increasing weakness
- muscle fatigue
- muscle pain
- joint pain
- cold intolerance
- sleep disturbance
- general fatigue
Other symptoms, such as urinary problems, may or may not be linked to PPS.
How is PPS diagnosed?
Unfortunately there is not a single test for PPS and it is important to make sure there is no other reason for the symptoms.
A number of factors will need to be considered before a doctor can tell you if you have PPS, including the following:
- 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?
- Do 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 new loss of muscle bulk?
- Are you getting pain in your joints?
- Are you having problems with breathing, sleeping and/or swallowing, or not being able to tolerate the cold?
- Is there any other medical explanation found for these symptoms?
It may be difficult to get a diagnosis of PPS because many healthcare professionals know very little about the condition, or even about Polio. Referral to a consultant neurologist, ideally with knowledge of Polio and PPS, may be the best way to get a diagnosis and advice.
What tests might I have?
If your GP suspects that you may have PPS, they should consider the following tests:
- Full Blood Count (FBC)
- Biochemical profile
- Creatine kinase (CK)
- Thyroid function
- Inflammatory markers (ESR, CRP)
- Rheumatoid factor
- Anti-nuclear antibody (ANA)
- Uric acid
- Glucose
- Routine kidney function
- Liver function
- Serum calcium
- Serum vitamin D status
If the results of these tests are abnormal, you are more likely to have another condition that needs investigation, but this does not rule out the possibility of you having PPS as well.
In addition you may be referred for x-rays of:
- Chest and spine
- Painful joints
If you have these tests and your GP is still not sure that you have PPS, you may be referred to a hospital consultant. At this stage you may have some or all of the following tests to rule out other possible conditions or confirm the likelihood of PPS:
- Electromyography (EMG) tests to see if Polio has damaged your nerves and muscles
- Sleep studies if you are having problems sleeping or feeling unusually tired
- Cardiological tests to check your heart rate and function
- Magnetic Resonance Imaging (MRI) of your spine
- Lung function tests to see how well you can breathe in and out
- Tests to investigate swallowing problems
You should remember that you may have PPS as well as other conditions, so not every health problem or symptom experienced will be related to PPS.
A brief history of PPS
Early studies showed evidence of PPS, but it was not until the 1980s that doctors began seeing more people with Polio developing increased weakness, fatigue and pain. For a long time neither patients nor doctors were looking for, or prepared to accept a connection with Polio. As a result, little research was done into any longer-term effects.
By the 1990s there was enough evidence to suggest that these new symptoms were related to the effects of Polio. Research took place to examine and understand the reasons for these symptoms. It is now known that people who had Polio may develop new symptoms years later caused by PPS.
Contact The Polio Survivors Network
Polio Survivors Network (formerly Lincolnshire Post Polio Network)
P.O. Box 954
Lincoln
LN5 5ER
U.K.
Telephone 01522 888601
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