Lee Clark, professional football manager and former Premier League player, tells us about his family’s experience with Guillain-Barré syndrome.
Lee starts by recounting the beginning of his father’s illness, and how it progressed.
Well it was December 2017 and my father had been diagnosed with cancer and one of the options of him surviving and getting through that was to get his voice box removed. He spent the Christmas period in hospital having the operation and was doing well going to see his pigeons as he was a pigeon racer. All of a sudden, he started feeling ill and aching, so he was taken back to the hospital.
What did the doctors think might be causing his symptoms?
They thought it was a brain tumour, brain cancer because obviously he recovered from bowel cancer and was doing exceptionally well recovering from throat cancer, they thought it might have spread to the brain. They also thought it might have been a severe heart attack or a severe stroke. After tests, these ideas were dismissed, and it was an emotional rollercoaster. When they did eventually find it was Guillain-Barré, we thought what’s that and what is it doing to our father?
How long did it take for your father’s illness to be diagnosed?
It took two and a half to three weeks.
How did you feel before your father’s condition was diagnosed?
The worst part was not knowing rather than the diagnosis, the not knowing 100 percent what it was, was the worst part.
Did he receive IVIG treatment?
He did, and initially there was an improvement so that gave us hope, but then he went back to where he was.
Did the medical team tell you what to expect?
I was in on a daily basis and didn’t see lots of improvement, the doctors couldn’t give us a timescale for the recovery.
How did the illness affect your father?
He was head of the family and a very hard-working man, he was a grandad and a great-grandfather and helped the children out, he was very active. I got the feeling he was embarrassed and lost a little bit of self-confidence, a man that had done everything for his family was just lying in bed because he was so ill.
Was your father able to be taken off the ventilator?
Through the physiotherapy, they were trying to take him off the ventilator for certain periods of the day, he got up to three hours off twice a day, but he then started to have problems, so they had to reduce that. We were told that him having to rely on the ventilator wasn’t such a good scenario to be in. When he decided to come off the ventilator and come home, we knew it wouldn’t be a long time before he passed.
Would it have helped to get an earlier diagnosis?
Without being an expert, it would have helped the family 100 percent if we got an earlier diagnosis.
How would you like to help GAIN?
If I can help in any small way, put my story out there to raise awareness of Guillain-Barré syndrome.
What have you learnt from your experience with Guillain-Barré syndrome?
Be positive about it, around the person who has been diagnosed and not to think of the worst-case scenario which unfortunately happened to my family.
How did you feel when GAIN asked you to be an ambassador for GAIN charity?
More than delighted, I was very proud.
To watch a video of Lee’s interview, please visit our video section of the website.