The Story so Far

By Andy Hughes

The ramblings herein, will hopefully enlighten the reader to some of the things that I had to go through as a child. And some of the pitfalls of growing up with a disability. It may will lead you through a tsunami of different emotions. Hopefully It will show you just how little tolerance people had back in the 1970’s and 80’s to somebody who wasn’t quite ‘run of the mill.’ The book is also a way of me expressing my anger and sadness because of what Polio has made me go through and what it has done to me both physically and mentally and how it has left me. You will hopefully understand better, the reasons why some of us end up being bitter and angry with the people who we love the most. It’s not easy being different. It’s not easy living in pain.

• Language: English
• Publisher: AuthorHouse UK
• Release date: Oct 18, 2020
• ISBN: 9781665581189

Andy Hughes

Born in Grimsby I grew up in the 60’s and 70’s. Proud to be part of a proud working-class family. But were people were less informed, and less tolerant of people with a disability than they are today. Growing up was painful and tough. Around every corner was a new obstacle for me to get over, be that a personal or physical barrier. Nonetheless, I stood my ground and have turned out to be an okay guy who has fathered three lovely daughters.

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© 2020 Andy Hughes. All rights reserved.

No part of this book may be reproduced, stored in a retrieval system, or transmitted by any means without the written permission of the author.

Published by AuthorHouse 10/16/2020

ISBN: 978-1-6655-8119-6 (sc)

ISBN: 978-1-6655-8118-9 (e)

Any people depicted in stock imagery provided by Getty Images are models,

and such images are being used for illustrative purposes only.

Certain stock imagery © Getty Images.

Because of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.

CONTENTS

My Story

How It All Began

Nightmare Street

Harlow Wood Hospital

First Of Many

Going Home….Again

Time Moves On

The Long Walk Home

Odd One Out

Leeds

Moving On

New Beginnings

A Learning Curve Starts Here.

Yes, It Attacks The Famous Too

A Polio Epidemic In New York City

Gallery

Executive Summary

The following is a book all about Polio and me. Well not exactly just about me, but it does shine a light into my childhood through to now (I’m now pushing 60)

Those of you who are young enough, and fortunate enough not to know what Polio is, can consider yourselves extremely fortunate. I’m sure that if you ask your parents or Grandparents about Polio, they’ll tell you about somebody they knew or know of, who’s life has been rocked by Polio. I have found that most people above a certain age know of somebody who was unfortunate enough to have experienced it.

The following is about my personal experiences with, and around Polio. It’s definitely not a pre-scripted play, written with a bit of research and a notebook and pencil. It’s real!

Some of my life is missing from this book for obvious reasons. I’m not going to tell you every little (or big) thing that has happened to me in my life. That would be too much like exposing myself to a firing squad! as well as making more than a few people blush! But I do hope to give you a brief insight into how this devastating virus not only affected my body, but how it has affected my mind too. Heaven only knows how my life of would have turned out if Polio had left me alone. You never know, I might have been that rock star I always wanted to be. Or maybe a doctor, trucker, or a long-distance runner… Who knows, hindsight is a wonderful thing. One thing for certain… I do know how my life has turned out with Polio, and here it is (well, some of it!)

People like me, who happen to have a disability, do not want your pity. Nor do we want our disability to be dismissed as of little or no importance. All that we require, is a little respect and our basic needs and rights to be respected. Surely that’s not too much to ask? Or is it?"

An individual who has experienced the Paralytic strain of Polio, or to give it it’s full title, Infantile Poliomyelitis, and has been diagnosed with LEoP/PPS (Late Effects of Polio or Post-Polio Syndrome) is, or at least should be entitled, in her/his own right in the first instance, to respect.

The assumption is, that whilst it is agreed that some people have impairments, it is not these impairments that disable them. Rather it’s the barriers and attitudes which exist that separate them from the rest of society, and therefore disables them. The fact that a person is unable to walk is not the problem. The problem is the inaccessible shops, social facilities, colleges, housing, transport and discrimination in employment. People with disabilities call this the Social Model of Disability. To me, it seems blatantly obvious that if these barriers, which prevent people with impairments from participation on equal terms, were removed, then disability would not exist

Just before I get started on my personal journey, I feel it is only right to tell you exactly what Polio is.

2.jpg

(National Library of Medicine, Public Domain.)

An American Board of Health quarantine card warning that

the premises are contaminated by poliomyelitis.

So, what is Polio?

Polio is a viral disease, which as well as effecting muscle and bone, it also affects the bodies central nervous system. Since immunisation has become widespread, thankfully cases of Polio are now very rare. I was in my doctor’s surgery recently for an unrelated matter when the subject of Polio was raised. He told me that a trainee doctor only has about a page of information to study when it comes to Polio which is a contagious, historically devastating disease. Thankfully, it has now been virtually eliminated from the Western hemisphere. Although Polio has on more than one occasion plagued humans since ancient times. There is evidence of Polio on some tombs in Egypt. Its most extensive outbreak occurred in the first half of the 1900’s before the vaccination became available in 1955.

At the height of the Polio epidemic in the early 50’s, nearly 60,000 cases were reported, which lead to more than 3,000 deaths in America alone. I tend to refer to America, as most information and studies were carried out from there. How true these numbers are though, is open to interpretation. Some more peculiar illnesses were added to the statistics and some cases were not reported at all. However, with widespread vaccination, the ‘wild strain’, of Polio occurring through natural infection, was eliminated from the United States by 1979. Polio, in 95% of cases, actually produces no symptoms at all. In the 5% of cases in which there are symptoms, the illness appears in three basic forms.

1. A ‘mild’ form called Abortive Polio. Most people who suffered from Polio, suffered this form. You may not even know you have it, it is very similar to having a mild dose of the flu.

2. A more serious form called ‘None-Paralytic’ Polio can cause the sufferer to be very sensitive to light, but again, a full recovery was usually the outcome.

3. A severe, debilitating form called ‘Paralytic’ Polio occurs in 0.1% to 2% of cases can in some circumstances, kill you. Only if you are lucky, you will end up like me!

People who have abortive Polio or none-paralytic Polio usually make a full recovery after only a few weeks. However, the ‘Paralytic’ strain, as its name implies, causes muscle paralysis, as well as the risk of death.

With the Paralytic strain, the virus leaves the intestinal tract and enters the bloodstream whilst attacking the nerves. In Abortive or Asymptomatic Polio, the virus usually stays in the intestinal tract. The virus can, and very often does, affect nerves governing the muscles in the limbs. It can also seriously damage the muscles we use to help us breathe. This can also cause respiratory difficulty, and also paralysis of the arms and legs.

Who gets Polio?

Anybody can. Polio is none discriminative, meaning that nobody is off limits. Polio is more common in infants and young children and can occur under conditions of poor hygiene. However, paralysis is more common and more severe when infection occurs in older individuals. In exceedingly rare cases, oral Polio vaccine has caused paralytic Polio in a person who received the vaccine or in a person who was in close contact of a vaccine recipient.

Great British Bake Off’s Mary Berry contracted polio at the age of 13 and had to spend three months in hospital. This resulted in her having a twisted spine, a weaker left hand and thinner left arm. She has said that the period of forced separation from her family while in hospital ‘toughened her up,’ and taught her to make the most of every opportunity she would have. The father of Stephanie Flanders, former BBC economics editor, was paralysed by the infection when he was 21. Michael Flanders was one half of the world-famous singing duo of that era, Flanders and Swann. He survived as a young man, but his paralysis due to polio meant he was forced to use a wheelchair. He died, aged just 53, through complications caused by the disease. Other well-known names affected as children include: Ian Dury (British pop star) Mia Farrow, Donald Sutherland and Joni Mitchell.

What are the symptoms of Polio?

Symptoms range in severity. From an unapparent infection, through to a paralytic infection which may result in death. Symptoms include fever, headache, nausea and vomiting, excruciating muscle pain and stiffness in the neck and back.

How is Polio spread?

Polio is predominately spread through contact with faeces.

How soon after infection do symptoms appear?

The incubation period is usually 6 to 20 days for paralytic cases, with a range of 3 to 35 days.

How is it Treated?

At the height of the Polio epidemic, the standard treatment was placing a patient with paralysis of the breathing muscles into an Iron Lung (more about that a little later.) The damaged limbs were often kept immobilised because of the confinement of the Iron Lung. Although in cases like my own, the limbs simply lose the ability to move. In countries where Polio is still a problem, ventilators, and Iron Lungs are still in use today.

Historically, home treatment for paralytic Polio and abortive Polio with neurological symptoms, was not enough. However, asymptomatic and mild cases of abortive Polio, as long as there were no underlying neurological problems, might have been treated like you would treat a dose of the flu with plenty of fluids and bed rest.

Is it Contagious?

YES. Polio is transmitted primarily through the ingestion of material contaminated with the virus found in the stool. Not washing your hands after using the toilet, or drinking contaminated water are common causes.

Can It Be Prevented?

In the United States of America, the recommendation is that children have four doses of inactive Polio vaccination (IPV) between the ages of 2 months and 6 years. By the mid 60’s, the oral Polio vaccine (OPV), developed by Albert Sabin, became the recommended vaccine. OPV allowed larger numbers to be immunised because it was easy to administer, it also provided contact immunisation, which means that an un-immunised person who, exposed to a recently immunised child, might also become immune. The problem with OPV is that in very rare cases, Paralytic Polio could result. This is known as vaccine damage.

Since 1979, there has been approximately 10 cases per year of Polio seen in the UK; and all of these have been traced to the OPV strain.

IPV is the vaccine that, through the production of antibodies, stimulates the immune system to fight the virus. IPV cannot cause Polio.

In an effort to eradicate all types of Polio, including those cases associated with the vaccine, the Centre for Disease Control and Prevention (CDC) in America, decided to make IPV the only vaccine used in the States. Currently, the CDC and American Academy of Paediatrics (AAP) recommend three spaced doses of IPV before the age of 18 months, and then an IPV booster between the ages of four and six, when children are entering school.

If you are planning to travel to Africa and Asia (where Polio still exists today), be sure that you and your children receive a complete set of Polio vaccinations. The Poliovirus can destroy up to 60 percent of the motor neurons (which control muscle movement) before any symptoms of weakness or paralysis appear.

How Long Does It Last?

Although the acute illness usually lasts less than 2 weeks, the damage it causes to the nervous system can, and often does, last a lifetime. Some patients who contracted Polio, never regain full use of their limbs, which very often appear withered. In my case, my left leg is about the circumference of a young child’s leg. Those who did fully recover, can easily go on to develop post-polio syndrome (PPS) years later. (As many as 50 years after contracting Polio.) With PPS, the damage Polio caused to the