Gemini Radio - Lincolnshire Post-Polio Network Media Event

Media Events

Gemini Radio
10:20 a.m. 21st November 1997

Colin Slade (Gemini Radio Presenter):
Just coming up to 23 minutes past 10 on Gemini AM and joining me now is Hilary Hallam. Hilary, good morning.

Hilary Hallam (Lincolnshire Post-Polio Network Honorary Secretary):
Good Morning.

CS:
Now, we're here to talk about PPS, Post-Polio Syndrome. Now, I don't think I'd be alone in saying this is something I've never heard of before. Presumably it's something that not a lot of people are aware of?

HH:
No, that's right. The word polio usually means to people, sugar-lumps, vaccinations, or if they're over 40 they may know people that had polio. I had polio when I was five, forty-five years ago in 1952. My legs were paralysed and I recovered, I even became a policewoman and I have little visable external sign of the fact that I've had polio. But for the last few years I have had medically noted and otherwise unexplained symptoms, and then I found out that there was something call Post-Polio Syndrome or The Late Effects of Polio.

CS:
Now, what are those effects? What are the symptoms?

HH:
We can get fatigue, muscle weakness, joint pain, trouble breathing or swallowing and sleeping. Loss of functional decline I think is the biggest one. You suddenly find you can't climb the stairs as easily. Where you could walk nine miles three years ago now, you know, I walk with a stick, I use an electric scooter. So it's really quite a change in your life style.

CS:
Does this affect everybody who had polio as a child or is it too soon to know?

HH:
The percentages of how many people they think it's going to affect are going up all the time and there is some talk that everybody who had polio eventually will get some sort of effect because we've overused joints and muscles for many years. For forty-five years I've used my arms to push myself out of a chair or stand up from the floor, so therefore my shoulders have been overused. So, yes, we don't know really.

CS:
Do we know how many people are likely to be affected? What sort of numbers across Britain will actually be involved?

HH:
We think there could be as many as a quarter of a million in Britain. There are many different surveys been done, many different statistics, but we do believe, looking at the latest American statistics, that possibly a quarter of a million in this country.

CS:
Well, up until recently this was something nobody had heard of. How are the Medical Profession treating it now? Are they taking it seriously?

HH:
A lot of the medical professionals just don't know it exists. Unless they have heard the term and looked it up, they don't know anything about it. So we started a post-polio information service and we have a web site on the Internet with full text medical articles that the authors, post-polio specialist authors, have given us permission to use. They are full text, straight as they are out of the text books that they were published in.

CS:
Where is most of the research going on at the moment?

HH:
America, Canada, Australia, New Zealand. There is research taking place bit by bit as people become aware of the problem. What we are trying to do is make the awareness of it available to everybody. Polio survivors, medical professionals... everybody. Then we can provide information for people to take to their doctors and medical professionals because it's the doctors that have got to make the decision, not us. We know we are getting older, we know we can have all the same conditions as everybody else, but it [Post-Polio Syndrome] is only by diagnosis of exclusion of anything else. But we would like polio, the fact that we had polio, to be taken into the equation when we have problems and we go to the doctors, that they do look at that; and sometimes it may not appear relevant at all but it can be.

CS:
I imagine there may well be people listening to us now who did have polio as a child, and thought they had made a full recovery as you did, and who are thinking now 'My God, what's going to happen to Me?'. Maybe they haven't started yet to experience these syndromes. Obviously they do need the sort of information you have on offer so how do they go about getting it?

HH:
Well, if they'd like to ring or write, I have a telephone in Devon of a friend who while I am down here for a few days [telephone number given], she will take peoples names and addresses for the next few days

CS:
So that's [telephone number given]. You're actually based in Lincoln where you actually started the Lincolnshire Post-Polio Network, which is now by virtue of being on the Internet, is now national. So you're going back to Lincoln from Tuesday so if anyone wanted to speak to you directly, they can get in touch with you there?

HH:
Yes, they can ring us on 01522 500134 and if anybody is on the Internet, if they type 'Post-Polio Syndrome' in on a search engine the they should find Lincolnshire Post-Polio Network fairly quickly.

CS:
Just type in 'Post-Polio Syndrome' and that should do it?...

HH:
Yes.

CS:
...Because not everybody is yet on the Internet but those who are will certainly take advantage of that.

HH:
Our web site address is rather long to read out over the air...

CS:
[Chuckle]

HH:
...People won't remember that but they will find us on the search engine.

CS:
Well, thank you very much for telling us all about it, Hilary, and we certainly wish you every success in your campaign to make people more aware of a problem which, as you say, is going to affect increasing numbers of people in the years to come; and let's hope a great deal of success in getting the medical profession to sit up and take notice and do something about it.

HH:
Thank you very much.

Our thanks to Colin Slade of Gemini Radio for providing the tape on which this transcription is based.

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The Lincolnshire Post-Polio Network
Registered Charity No. 1064177
An Information Service for Polio Survivors and Medical Professionals

All enquiries, book requests, medical article requests, membership fees, items for newsletters and donations to
The Secretary, Lincolnshire Post-Polio Network
PO Box 954, Lincoln, Lincolnshire, LN5 5ER United Kingdom
Telephone: +44 (0)1522 888601
Facsimile: +44 (0)870 1600840
Email: info@lincolnshirepostpolio.org.uk

Document preparation: Chris Salter, Original Think-tank, Cornwall, United Kingdom.
Primary Document Reference: <URL:http://www.ott.zynet.co.uk/polio/lincolnshire/media/r971121.html>
Alternate Document Reference: <URL:http://www.zynet.co.uk/ott/polio/lincolnshire/media/r971121.html>
Last modification: 13th April 2009.
Last information content change: 13th April 2009.

Media Events

Gemini Radio 10:20 a.m. 21st November 1997

Gemini Radio
10:20 a.m. 21st November 1997