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   Inside Out - East: Monday 14th October, 2002

POST POLIO SYNDROME

Post polio sufferer on ventilator

Polio was the killer disease that struck fear into a whole generation in the 1950s. Now it's back in the form of Post-Polio Syndrome.

For many of us polio is a distant memory and some people even think 'it doesn't exist anymore'.

In the 1950's there were 45,000 cases in the UK and hundreds died.

The polio vaccine introduced in the 1960s proved highly effective in virtually eliminating the disease in the UK.

But now the battle with polio is being fought all over again.

Post-Polio syndrome

For some former polio sufferers, they're reliving their worst nightmare again with the onset of Post-Polio syndrome.

Post-Polio Syndrome (PPS) describes a range of new symptoms that occur 20 - 40 years after the original onset of the polio infection.

Patient and doctor
Some former polio sufferers are experiencing new symptoms two or three decades later

Decades after recovering much of their muscular strength, survivors of paralytic polio are reporting unexpected fatigue, pain and weakness.

Experts believe that the cause of this new syndrome is the degeneration of motor neurons.

PPS is caused by the death of individual nerve terminals in the motor units that remain long after the original polio attack.

The onset of Post-Polio Syndrome is usually gradual and takes place over several years. It can also be very unpredictable.

Its onset often occurs following a physical or emotional trauma, illness or accident.

Symptoms

Amongst the symptoms of Post-Polio Syndrome are muscle weakness, breathing difficulties, and general fatigue.

Here's our guide to the most common symptoms encountered by PPS patients.

  • Joint pain, muscle tiring and general fatigue. Body exhaustion.
  • Decreased tolerance to low temperatures.
  • Breathing and swallowing difficulties.
  • Rapid muscle tiring and sleeping problems.
  • Gastro- intestinal problems.
  • Breathing and respiratory problems.

Frequently, symptoms occur in muscles affected by the original polio. Sometimes they also appear in muscles that were not previously affected by the polio attack.

Other complications associated with Post-Polio Syndrome include neuropathies, trapped nerves, arthritis, and muscle atrophy - known as Post-Polio Muscular Atrophy (PPMA).

Diagnosis can take some time as a range of other medical conditions share similar symptoms.

Hope for sufferers

At present there is no way of preventing Post-Polio Syndrome.

  • Post-Polio Syndrome sufferer
    Former polio sufferers need to be alert to changes in their bodies

Several drugs are being studied in the hopes that they will provide relief from some of its symptoms.

The British Polio Fellowship recommends a wide range of non-drug based measures.

They particularity recommend physical and occupational therapy, as well as strengthening, stretching, and aerobic exercises.

It's important that former polio sufferers make sure they have a healthy lifestyle, eat a balanced diet and avoid weight gain which can aggravate stress on muscles and joints.

Striking a balance between rest and activity is also recommended by health experts.

The future

One of the problems in treating Post-Polio Syndrome is that many specialists who understood polio are retired or dead.

Medical experts are currently researching Post-Polio Syndrome and potential treatments including new drugs.

It will be some time before new drug based treatments become available.

It's clear that the battle against polio is far from over.

See also ...

On the rest of the web
Polio Fellowship International Polio Network
Polio Immunisation Lincolnshire Post-Polio Library
Post Polio Syndrome Central
Polio Experience Network

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Readers' Comments

We are not adding any new comments to this page but you can still read some of the comments previously submitted by readers.

Roy, Brightlingsea
I am a victim of the Polio epidemic of 1956, I suffer Post-Polio big time. Symptoms include muscle pain, joint pain, 4 inch loss of height, ulcers, septosymia, amputation, weakness, severe fatigue and sleep problems. Life is a continuous fight to keep mobile. If my problems make GP's more aware of victims suffering, I will be so pleased.

Mrs. J. M. Beedel, Felixstowe
Your report about polio was very interesting. I had polio 56 years ago (in Switzerland) when I was 4 years old. My right arm was badly affected but thanks to physio got better within a few years. Latley, I noted that I am having more difficulties lifting this arm.

Mrs A Durrani, Colchester
I went to my GP with PPS & he said he'd never heard of it. I gave him printed matter from the internet about it. Next visit he said he had not had time to read it & therefore I do not feel I am getting the correct treatment. My symptoms are mild but I hoped by reacting quickly to beat it.

Chris Meek, Norwich
I had Polio in 1957/8 aged 2/3. I started having problems in 1998 and was forced to retire on ill health in 1999 as a result of Post Polio syndrome.

Miss Knight, Essex
I think I may be one of those who are possibly suffering post polio syndrome. For the past year I have been seeing several specialists who can find no cause for the symptoms I am currently having: gastric problems, tiredness and leg pains.

I was 5 when I had Infantile Paralysis (as it was then called), but only a mild attack. I was treated at home for months with my GP visiting at all hours of the day and night. I remember being upset on hospital visits because I wanted calipers and couldn't have them.

I am now nearly 60. I will make an appointment to see my GP tomorrow.

Mr Long, Suffolk
Am sufferer.Ill in 1949. Paralysed all over except lungs. Recovered well, but now going backwards.

Heard of post-polio whilst in USA 1989, denied by consultants here. GP supportive, said needed regular physio.

NHS washed hands on me at Addenbrookes (Cambridge) Hospital saying I was chronic not acute. This happened three times, so have had to pay for private treatment, fortnightly, since 1991.

In 1994 GP suggested Testosterone (Male HRT) to stop further muscle wastage and draw line in sand. It works. Although have full length splint on left leg and half one on right, am able to work as journalist, and fly Cessna aircraft.

Am keen to help others where possible, so have contacted Polio Fellowship in London.

Paul Levy, Harleston, Norfolk
I was so pleased to see a programme about PPS. It is important to raise awareness, not only to inform the general public, but also, supprisingly, to GPs and health care workers.

I contracted acute parralitic polio in 1955, before I was even a year old and my life followed the course that your programme highlighted. We tend to grit our teeth and get on with it.

I knew nothing of PPS, and when my body began misbehaving and I went to my GP, I was faced with blank looks and shrugging shoulders.

If I hadn't got in touch with the British Polio Federation I may still be suffering in ignorance to this day.

Eventually, through persistence and stubourness, I was reffered to the Lane Fox Unit at St Thomas's hospital where I was fortunate enough to be placed on an experimental programme for rehabilitation.

I learnt a lot, but sadly the funds have all dried up. I would be interested in being kept informed of any feedback from your item, as well as offering to help in any way that I can. Keep up the good work.

Ed Taylor, Milton Keynes
I had Polio in 1952 when I was 11 years old. My symptoms, which I vividly remember, were pains in my legs together with a fever. The doctor was summoned and was instantly suspicious that I might have Polio.

I was sent by ambulance to the West Norwich Isolation Hospital where a analysis of my spinal fluid confirmed the doctor's diagnosis.

I stayed in hospital for four months and I remember my Mother being told "Oh, he'll never walk again." as the polio had affected my legs.

Luckily for me a freshly trained physiotherapist had just been taken on and, with a considerable amount of perserverance from her and me, I did walk again and without the need for sticks or callipers.

... In mid-life the polio did not affect me much and I even went to (and enjoyed) low-impact aerobics classes in my late 40s. But having reached the age of 50.... I started to have difficulty climbing the stairs and would fall over from time to time for no apparent reason.

Luckily my remaining two years at work were just 15 minutes away by car and, although my knees gave way from time to time.

In the mid 90s, I'm not exactly sure when, I came across a person who was collecting for a polio charity who mentioned PPS.

I investigated PPS further via the internet and spoke to my GP about it. He referred me to a specialist who subsequently carried out some electrical tests that confirmed that I had had polio. And that was that!

Unfortunately I contracted another illness that required some interesting metalwork in one of my femurs. That didn't exactly help my mobility!

But I do get about at home and can climb the stairs despite my weak quad muscles, thanks to some extra handrails.

I can also shop in the local supermarket aided by a one crutch and one trolley. With a pair of crutches I can walk a reasonable distance, a mile or so, but I get tired and have to sit down from time to time.

Steps remain difficult especially coming down them. I have to be very careful and concentrate lest a knee gives way.

On the topic of stairs and steps, I find the general lack of hand rails quite amazing.

I see a physio on a regular basis who advises me on what exercises to do and have found that swimming is good for the heart and takes the weight off the legs. I know about it if I do too much!