WHAT IS POST POLIO SYNDROME

My mother, Margaret was 23 when she contracted polio in 1948. She had been to the swimming baths in East Ham, London and soon after fell ill. Paralysed from her chest and down her left side, she spent months recovering in hospital.

Margaret was born and grew up in East London. She met my father in 1946, just two years before contracting polio and not long after the war had ended, and he had been de-mobbed from the Navy.

The polio virus left her with a withered left leg and lack of muscle on the left side of her upper body. She was able to walk, but with a limp.

My parents married in 1950 and three years later Margaret fell pregnant with twin boys. Both babies were delivered by forceps but were extremely poorly. One had a hole in his heart and the other a hole in his oesophagus (food pipe). Sadly their lives were short, and because of the polio damage to her body, my mother was advised not to have any more children.

Lucky for me she didn’t listen. After a closely managed pregnancy and being made to wear a leather harness to protect the foetus, she went into labour and I was born fit and healthy in June 1956.

Afterwards, my mother had no choice but to wear various types of supportive girdle or harness to help support her stomach muscles and enable her to stand and walk. She wore them for the rest of her life.  

When I was three, she returned to work as a full-time early years teacher and remained working until she took early retirement, aged 57. The job was taking its toll on her body and she’d been diagnosed with osteoarthritis.

I was aware from quite an early age that my mother wasn’t like other mothers. She couldn’t run about and play like they did or walk long distances. She often lost her balance and fell over and became tired very easily. Her breathing wasn’t good either.

But it didn’t matter. She loved me very much. In fact, I was fortunate to have two very caring and loving parents. I would watch how my father did a lot of the cleaning in the house and the heavier jobs, such as lifting and carrying. I never saw that done by any of my friends’ fathers.

My mother's issues came into sharp focus when I became a mother myself. In contrast, my pregnancy was easy and straightforward, and so was the delivery of my son. It was then that I better understood why she had a hysterectomy, and why she suffered gynecologically and developed a hiatus hernia*. 

When my father passed away aged 67, we (my mother, my son and I) all moved to Cornwall and I became my mother’s carer. For 30 years I looked after her and cared for her, just as my father had done.

I was only 38 when I was diagnosed with rheumatoid arthritis and a compromised immune system. The doctors told me this ‘could be’ as a result of my mother’s polio. (NOTE FROM DR JULIAN HARRISS, BPF EXPERT PANEL CHAIR: This is not feasible. Elizabeth was misinformed).

We were both diagnosed with sleep apnea** and my mother had to use a CPAP machine.***

As my mother aged, she was diagnosed with Post-Polio Syndrome. She was a mentally strong woman and tried not to let it affect her. At first, she used sticks to aid walking, then moved to a four-wheeled rollator, and finally had to succumb to a wheelchair.

I was still able to work full-time and care for my mother independently in her own home, but it became much harder after I was diagnosed with fibromyalgia, chronic fatigue syndrome, asthma, and irritable bowel syndrome (IBS). Again, my health professionals suggested this could have been as a result of my mother’s polio. (NOTE FROM DR JULIAN HARRISS, BPF EXPERT PANEL CHAIR: None of these conditions have any association with polio).

My mother developed dementia in 2019 and because of the COVID lockdown her health deteriorated. She was no longer able to wear the tailor-made, fibreglass, full torso fitted jackets built for her by the Orthotic department at the Royal Cornwall Hospital in Truro, Cornwall. The jackets became more and more cumbersome as her condition deteriorated through age. 

I watched the effects of polio ravage my mother’s body for 66 years, as she shied away from social situations because she couldn’t join in. I watched my mother become increasingly reliant on me over the years to help her bathe, dress, cook and take her out.

Before my father died he asked me to care for my mother and I made a promise to him that I would. I kept that promise until the day she passed away in April 2023, just short of her 98th birthday.

Margaret Simmons (nee Garrard) was my mother, and I am pleased and proud to tell her story and how polio affected both our lives.

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​Photo: Margaret Simmons with daughter Elizabeth.

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* Hiatus hernia - part of your stomach moves up into your chest.

** Sleep apnea - breathing stops and starts while a person sleeps.

*** CPAP machine - gently pumps air into a mask covering the nose and mouth worn at night.