Touching Lives - November 2005
My story - living with the legacy of polio
“I remember being lifted onto a stretcher and along the deck. All I could see were faces looking down, the black sky behind, and the blazing lights of the dock.”
This is John Prestwich’s last memory of life before polio. It was his seventeenth birthday and he’d been working as a deckhand in the merchant navy. His vessel was docked in Corpus Christi, Texas, the last stop before returning home to England for Christmas. One afternoon, having felt increasingly unwell for several days, John retired to his bunk — he never got up again.
John recalls “When I regained consciousness, I couldn’t speak and there was something in front of me and this swishing noise. I never realised then that this noise would be with me every minute of every day for the next 50 years.”
The ‘something’ that John saw was an iron lung, which worked by creating an air-tight seal around the patient, who was placed on their back so that only their head was visible. A pump alternately raised and lowered the air pressure inside to fill and deflate the patient’s lungs, forcing the body to simulate breathing.
Today, age 67, John is still dependent on respiratory equipment to keep him alive, but thankfully technology has advanced and after seven years of lying hospitalised in an iron lung he was provided with a far smaller, portable version that straps to the chest. In fact, ^John has the dubious honour of holding the world record for absolute dependency on a respirator.^
It is difficult to imagine how a young man, suddenly robbed of all independence, could remain positive about life, but John explains, “I think of my paralysis as being an enemy that wants to overpower me. I wasn’t, and I’m still not, prepared to submit and let the enemy win. I don’t know why. Some of us are more bloody minded I suppose.”
In March 1956 John was transferred to the Royal Free Hospital in London, where he met his future wife. Maggie Biffen was an occupational therapist who helped John pass the days in the iron lung by reading with him and listening to music. However, their relationship quickly developed beyond purely professional, and in December 1971 they were married in the Hertfordshire village where they had bought a bungalow. Finally, after sixteen years in hospital, John was able to live in his own home.
Wonders of modern technology
Maggie has provided John with the 24-hour-a-day care he needs ever since, but they’ve gradually adapted and modified their home to allow John as much independence as possible.
“Thanks to modern technology, for some years now I’ve had considerable control over my immediate environment. I have two computer systems which allow me to control a range of household equipment including the radio, TV, computer — even the curtains!”
A major milestone in John’s independence was the development of an electric version of the ‘chair-bed’ in which he spends 24 hours a day. The chair operates on a switch called a ‘sip/puff switch’ which is a vacuum switch controlled by the air in the mouth through a narrow tube [developed, incidentally, with Action Medical Research funding — Ed.] John says, “I am 6’ 3” tall and together with my chair-bed, batteries and respiratory equipment weigh 31 stone — it was no easy task for Maggie to push me around! I’ll leave you to try to imagine what it felt like when, for the very first time in almost 44 years, I was able to move myself totally independently from ‘A’ to ‘B’!”
John has had his share of adventures, travelling to Paris to go up the Eiffel Tower, and taking a helicopter ride over London — a treat organised by Maggie to mark the 25th anniversary of his contracting polio. But John needn’t get into a helicopter to risk his life — in reality ^something as simple as a common cold can lead to serious medical complications.^ The extent of John’s paralysis means that he can’t cough, so even the most minor chest infection results in John finding himself hospitalised, back in the traditional iron lung.
The biggest factor in John’s wellbeing, though, is his respirator. If that should fail, John would be unconscious in three minutes and dead in five. Therefore Maggie can never stray too far from his side. “When I go out shopping and leave John in the van, I can never be gone for more than a few minutes. If I’m in a queue too long, I have to leave my shopping and go out to check that John’s alright.”
Most people would feel bitter about contracting polio shortly before an effective vaccine was introduced. But not John. “Many people look at me and think ‘poor old John’, but it’s not like that at all. People need people. There are many in this world who aren’t loved by anyone. I’m very lucky.”
In fact, ^John has used his experiences to positive effect, raising awareness of the importance of immunisation.^ “The polio epidemic and subsequent vaccine demonstrate clearly the importance of medical research. Although polio isn’t the devastating scourge it once was, the virus has not been eliminated so it is vital to continue to take up the vaccination. I didn’t have that opportunity.”