Paul’s GBS Story – Peer Support Mentor Programme

In August 2016, Paul Fitzhenry (52) from Co. Clare developed a spinal cord injury from a rare auto immune disease called Guillain-Barre Syndrome.

Paul, who is from Limerick and is married with children, explained that his initial onset began with a tingling sensation in his left foot and within two weeks it developed into both of his feet and calves.

As the weeks progressed and Paul began to notice further deterioration he decided to go to hospital in mid-October and it was there that he was told he had Guillain-Barre Syndrome.

While in hospital, Paul’s condition deteriorated to the point where the numbness he was experiencing spread up from his legs to the left and right side of his body. It got to a point at one stage where he couldn’t breathe and his arms and legs were paralysed.

“Sensory-wise I lost a lot. My face dropped, I had numbness in my tongue and I had constantly watering eyes. All my muscle structure inside my chest wall and my stomach just dropped down and it gave me this wonderful belly at the front. I have to work hard to bring all of that back up again. I have months of exercise ahead of me but thankfully, motor-wise I lost nothing.”

Paul was an in-patient at University Hospital Limerick, Mid-Western Regional Hospital in Ennis from October 2016, and he was then moved to the National Rehabilitation Hospital (NRH) in Dun Laoghaire until February 2017.

While a patient at the NRH, Paul met Glenn Gray from Spinal Injuries Ireland (SII) who regularly visits the hospital wards to tell people about the help they can access from SII. Glenn advised Paul that he could take part in the Monday night Peer Support group in the NRH.

Paul began attending the Monday night Peer Support group where he met other patients who also had Guillain-Barre Syndrome along with patients who had other types of spinal cord injuries.

“It was great when I went to the first peer support meeting. I met a few of the other patients with spinal cord injuries and we just chatted and swapped stories. We all had different things going on but it was great to chat.”

Paul met his peer support mentor, Sandra Loftus, a few weeks later at one of the Peer Support group meetings in the NRH. Sandra also suffers from Guillain-Barre Syndrome and she came in to give a talk and meet Paul.

“Sandra’s Guillain-Barre attacked her motor-neurone system and I’m glad I lost sensory and not motor because to me her story is far more difficult than mine. I count my blessings for everything I have. She came along and she had a different angle on what it could’ve been like for me but thankfully it wasn’t. I have huge admiration for her because you’d never know she had Guillain-Barre. She walks normally, she talks normally, she’s fine, not a bother. Whereas if I talk for too long I drop into a lisp and I have to pull my face back in. But I have huge admiration for what she went through and where she is now.

“Having Guillain-Barre is a big thing and it’s something you have for life so to know that I have Glenn and Sandra from SII to go to for support is great. It really is so important. From my point of view, I know absolutely nothing about Guillain-Barre so to know that I can pick up the phone or drop SII an email about it is priceless. It’s a great comfort to be able to pick up the phone and say ‘This is going on in my world, can you help me?’

“It may not even be a medical issue. It may be a work-related problem or I might want to sort out starting a course or something. To know that you have somebody to talk to that has been there, done it, and got the t-shirt, is huge. Some people prefer to talk to a priest but to know that there’s somebody in the same boat as you is amazing. And they can throw the positivity on something that you can’t see the positivity on. To me, that is massive.”

Paul was discharged from the NRH in February 2017 and is enjoying being back with his family and starting back to work again following his four month battle in hospital with Guillain-Barre Syndrome.