A mother has told how she was petrified after being left paralysed and unable to speak, as a rare condition meant she became trapped in her own body. Healthcare worker Kerry Williams was only able to communicate with her eyes as she was not even strong enough to move her mouth to speak.
It meant Kerry, who described herself as “very chatty and outgoing” before her ordeal, agonisingly had to use her eyes to communicate with doctors who would point to the letters of the alphabet to spell out words in order to understand her. The 52-year-old went into hospital in Wolverhampton in February as she was experiencing pins and needles down her left side and struggling to walk.
After an MRI and blood tests, doctors diagnosed her with Guillain-Barré syndrome, a very rare and serious condition that affects the nerves. Her condition then deteriorated rapidly and in frightening fashion. The mum-of-two, from Wolverhampton, explained: “I then found it very hard to breathe and rang my family saying I couldn’t speak on the phone any more as I couldn’t breathe which was terrifying.
“I was so frightened. Last thing I remember was being told they were going to sedate me.” Hospital worker Kerry, who supports stroke patients at Wolverhampton’s New Cross, now needed urgent care herself and was left fighting for her life as she was put on a ventilator.
She spent the next 76 days in intensive care on a ventilator. But even as her condition began to improve she was effectively ‘locked in’ her own body and only able to move her eyes. It was a terrifying situation and she had no idea when it would end.
Emily Davies-Veric, an advanced practitioner speech and language therapist, was one of the specialists brought in to care for her. She said: “When we met Kerry, due to her ongoing ventilation needs she was unable to use her voice initially. She also had significant globalised weakness meaning she was unable to move her arms or hands to point or hold a pen to write.
“Facial weakness meant that Kerry was unable to mouth words. She was essentially ‘locked in’, meaning that movement in her eyes was her only method to communicate.”
“Not being able to talk or communicate was terrifying,” Kerry recalled. “I was so grateful to the speech and language team for their intervention. Without them my mental health would have really suffered.
“For me being able to communicate was the biggest priority. I am a very chatty and outgoing person and I love to talk to people. Not being able to was so hard.”
Carers used a technique called partner assisted scanning with an alphabet chart. This meant that a member of staff would hold an alphabet chart and move through line by line following Kerry’s eye movements to spell out words. It was a slow and frustrating process, but the only way she could communicate.
Emily said: “We then moved to an e-tran frame which uses colour coding to spell out words. Kerry’s facial movements began to return at this time and she would mouth the colours making the process faster but still found this tiring.
“Throughout this time Kerry continued to received rehabilitation from the whole team with a particular focus on movement from ventilator support and the tracheostomy, as well as exploring a return to eating and drinking.”
Then came the emotional moment when Kerry, who had been stuck inside her own head for so long, heard her own voice again after going for so long not being able to speak. Eimily said: “We began to look at short periods of reduced ventilation which enabled us to work with Kerry on restoring normal breathing and airflow which led to hearing her voice for the first time in months. A massive moment for Kerry and all those caring for her.”
Kerry has now had her tracheostomy removed and is eating and drinking normally and receiving ongoing rehabilitation as she recovers following her ordeal. And Kerry said: “The SLT’s (speech and language therapists) were my lifeline. Without them I wouldn’t have been able to communicate for weeks. I am so grateful for their help and support.”