Bishop's Stortford family's world turned upside down after dad diagnosed with crippling neurological disorder FND
The look in the eyes of a consultant drove home to Nicole Gavin that the crippling neurological disorder her husband James was suffering from would turn her world and that of her family upside down.
James had been diagnosed with functional neurological disorder (FND) after more than a year of pain and fear which had perplexed many of the health professionals they had seen.
It was the reaction of one consultant at St George's Hospital, central London, that hit Nicole.
"That look in their eyes of generally feeling sorry for you is heartbreaking," she said.
In a Zoom interview with the Indie, the Thorley Park couple revealed how their ordeal began in March 2019.
James, 44, who had a handyman and gardening business, said: "I was painting the outside of someone's house when suddenly my leg gave way and there was this snapping, popping sensation in my groin. I was in excruciating pain."
Somehow he carried on working, but the same thing happened a week later and it kept getting worse. A visit to A&E resulted in him being sent away with powerful painkillers.
By August of that year the agonising sensation was happening five times a day and James was in constant pain. After that it was severe pain 24/7.
Nicole, 42, said: "Everybody was really frustrated and asking why they weren't sorting him out."
James was admitted to Addenbrooke's Hospital in Cambridge when his GP got involved. After being discharged, an incident in December at a pre-Christmas meal with friends and family brought things to a head.
"James went to get out of the chair and he screamed in pain. He couldn't move and he went white," said Nicole. "I barely got him into the house."
He was readmitted to hospital and stayed there until December 28, missing Christmas and daughter Norah's 10th birthday.
When he was discharged again, the family still did not know what was wrong.
As Nicole revealed in a Facebook blog she has written since called Our Journey With FND: "Although at that point we didn't have a definitive diagnosis, we were told it may be neurological. James was pumped full of painkillers and opioids, which were not helping touch the pain."
Because of the difficulty he had climbing stairs, they decided to move in with Nicole's parents in Willow Close as they have a downstairs bedroom and bathroom.
"At the time I was just pleased to be out of hospital, I just maybe thought it would be for a few weeks," said James. "Now we're still here 15 months down the line."
That's not to say the couple are not eternally thankful to Nicole's parents for their support and help. Nicole said her mum Carol-Ann Barrett has a degree in herbal medicine and had been a massive help in insisting James was admitted to hospital.
Upping sticks and moving home was hard on the children, Norah and her 15-year-old brother Joe. "They're amazing outwardly," said James. "But they're missing their rooms – it's tough. They've braved it out and that's fantastic."
At the start of 2020, James's health further deteriorated. Nicole wrote in the blog: "In January James started to have what looked like a stroke, with the left side of his face drooping and unable to talk or stand.
"As well as this he was having a seizure, causing his whole body to convulse. James had to be taken to A&E. This seizure lasted 11 hours! It was very scary in A&E. At one point James swallowed his tongue due to not having any physical control of his body."
After scans of James's brain, the next day he was diagnosed with FND, which was confirmed in April.
Although the couple are praising of the district nurses and Church Street surgery, Nicole said she felt abandoned by Addenbrooke's.
"All the way through this journey we've had to fight to get tests done to achieve a diagnosis and to get help for James," she wrote.
"We now realise without us being tenacious and insisting, we would not have potentially got to this diagnosis so quickly. Many people with FND go undiagnosed, misdiagnosed for years."
All through the ordeal they try to remain positive, despite a devastating conversation with a consultant.
"He said 'To be honest, you'll never be the person you were' – it was hard to hear," said James.
The support of their family has been key – along with the love of their dachshund Frank, who is devoted to James.
"If I'm having a bad day and having a seizure, he stays with me all day," said James, who said his parents-in-law's cockerpoo Herbie also seemed to know when he was about to have a seizure.
Nicole admits the family's "little world has changed for us all". Raising awareness of the condition maintains their positivity and, as Thursday (Mar 25) was FND Awareness Day UK, James had his lockdown hair shaved off to raise money for research. He has smashed the modest target of £150 by raising well over £1,000.
The family cling to the hope that James's condition will improve and are keen to help and support other sufferers.
Nicole wrote: "We have recently been offered, by a hospital in London, a possible four-week inpatient programme for James where they hope with a multidisciplinary team approach to help him with managing symptoms or even possibly improving some symptoms.
"We're desperate for this chance, but it's all Covid-19 dependent and there's an extremely long waiting list. As James is severe, we hope this will not be too long. We're realistic this may not happen for some time."
* To sponsor James' head shave, visit https://www.justgiving.com/fundraising/james-gavinfnd.