One mother has recounted how she was petrified after being paralyzed and unable to speak when a rare condition meant she was trapped in her own body. Health worker Kerry Williams was only able to communicate with her eyes as she was not even strong enough to move her mouth to speak.
This meant that Kerry, who described herself as “very talkative and outgoing” before her ordeal, had to painfully use her eyes to communicate with doctors who pointed to the letters of the alphabet to spell words to understand her. The 52-year-old was admitted to hospital in Wolverhampton in February when she saw needles and needles down her left side and struggling to walk.
After an MRI scan 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 a frightening way. The mother of two from Wolverhampton explained: “Then I had a very hard time breathing and called my family and said I could not talk on the phone anymore as I could not breathe, which was scary.
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“I was so scared. The last thing I remember was being told they would reassure me.” Hospital worker Kerry, who supports stroke patients at Wolverhampton’s New Cross, now herself needed emergency care and was left in the fight for her life when she was put on a respirator.
She spent the next 76 days in intensive care in a ventilator. But even as her condition began to improve, she was effectively ‘locked inside’ her own body and was only able to move her eyes. It was a terrible situation and she had no idea when it would end.
Emily Davies-Veric, an advanced practicing speech and language therapist, was one of the specialists hired to take care of her. She said: “When we met Kerry, she was unable to use her voice initially due to her persistent ventilation needs. She also had a significant globalized weakness, meaning she was unable to move her arms. or hands to point or hold a pen to write.
“Weakness in her face meant that Kerry was unable to speak in words. She was essentially ‘locked in’, meaning movement in her eyes was her only way of communicating.”
“Not being able to talk or communicate was scary,” Kerry recalled. “I was so grateful to the speech and language team for their intervention. Without them, my mental health would really have suffered.
“For me, being able to communicate was the biggest priority. I’m a very talkative and outgoing person, and I love talking to people. Not being able to was that hard.”
Nurses used a technique called partner-assisted scanning with an alphabet chart. This meant that a member of staff kept an alphabet chart and moved through line by line following Kerry’s eye movements to spell 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 that uses color coding to spell words. Kerry’s facial movements started to return at this point and she wanted to correct the colors, which made the process faster, but still seemed to was tiring.
“Throughout this time, Kerry continued to receive rehabilitation from the entire team with a particular focus on movement from ventilator support and tracheostomy, as well as exploring a return to eating and drinking.”
Then came the emotional moment when Kerry, who had been stuck in her own head for so long, heard her own voice again after walking for so long without being able to speak. Eimily said: “We started looking at short periods of reduced ventilation, which allowed us to work with Kerry to restore normal breathing and airflow, which led to us hearing her voice for the first time in several months. A huge moment for Kerry and all those who care for her. “
Kerry has now had her tracheostomy removed and eats and drinks normally and receives ongoing rehabilitation while recovering from her ordeal. And Kerry said, “The SLTs (logo and language therapists) were my lifeline. Without them, I would not have been able to communicate for weeks. I’m so grateful for their help and support.”