How Mark’s ‘touch of the cold’ led to paralysis within a day
Published: 1 Jun 2014 12:000 comments
But a young man in a customer service job, with interests in farming and catering, was left virtually powerless after a rare and debilitating condition affected him almost two years ago.
Even now, Mark Edmondson from Letterbreen is not fully recovered from the effects of Guillain-Barre syndrome which is an auto-immune condition in which the nerves are attacked by the immune defence system.
It effectively causes paralysis.
That’s how Mark ended up in hospital, lying in bed with no power from his neck down, surrounded by vital medical equipment in the Royal Victoria Hospital, Belfast as he underwent treatment including intravenous immunoglobulin.
It all started on a Thursday morning as he prepared for work at Liberty Insurance, Enniskillen. It was June 1 2012.
“I woke up weak and nauseous but I went to work but felt weak during the day. I came home and had a touch of a cold,” he explained.
“The next morning, Friday, I was very weak and could hardly walk,” he recalls, explaining how he had to get an ambulance to get to A & E. With blood tests and other checks clear, he asked for a second opinion. Dr. Varma came by and admitted him immediately, discussing his case with colleagues in the RVH, Belfast. They soon had a name for his problem, Guillain - Barre Syndrome.
Usually the symptoms start in the feet or legs and progress up the body over a few days, depending on the severity of the condition from mild to severe.
The exact cause is unknown and there is no cure. It is extremely rare, striking between two and eight people in every 100,000 but is more common in the 30-50 years age group.
He says the Syndrome appears to be triggered by acute viral or bacterial illnesses such as respiratory or gastro-intestinal infections which had occurred earlier. The resultant antibodies attack the myelin sheaths that coat the nerve cells causing paralysis, muscular weakness and strange sensations as the sensory nerves of the skin are affected.
For Mark, by the third day of feeling unwell, he was admitted to the RVH. He couldn’t move from his neck down and as he prepared for treatment a week later, his could find the muscles in his throat beginning to collapse too but fortunately he didn’t need ventilation.
“I was on a drip for five days in the neurology department and spent three weeks in Belfast,” he said, explaining how the two main treatments are intravenous immunoglobulin and plasma exchange which target the antibodies in the blood which were reacting to the peripheral nerves and damaging them.
“I was allowed back to Enniskillen for 10 days until I was transferred to the Spinal Unit at Musgrave Park Hospital, Belfast to commence rehab,” he said. That was on July 9. It was not until October 7 that he was allowed home for good.
Mark said that although he had been allowed out for a few weekends before finally being released from hospital, he found it difficult to adjust to everyday life again.
“It can be overwhelming as you are coming back into a world that can be daunting. I was very nervous coming back down the road,” he remembered.
During his rehabilitation, Mark had an individual physiotherapy session every day and worked with an Occupational Therapist five days a week which was intensive. In addition if he felt up to it, he could continue with individual training on light weights.
“I went back to work in January part-time and Liberty have been very good to me,” he said.
Mark said he found the condition extremely frustrating as he was unable to do anything for himself for a long time. However he acknowledges all the support he received from doctors and nurses in all the hospitals he had been admitted.
“The people at the Royal Victoria Hospital said I’d get better and to have faith. You need to be strong minded,” he said, encouraging any other sufferer of this Syndrome to battle through with patience as recovery can be slow at first.
He said the worst experience for him was the time when he was being monitored 24 hours a day, in intensive care with a nurse by his side all the time.
“It’s been a life changing experience for me but my neighbours and friends have rallied round very well. I was lucky that I had a steady recovery,” he said positively.
Soon after gaining more independence, Mark wanted to return to drive again but had to undertake a driving assessment before gaining confidence of the road.
“That gave me another boost and more independence,” he said, as he was able to visit friends and get out and about more. He also communicated with other sufferers through Facebook and support groups online.
Since returning home from hospital Mark has helped to raise awareness of the condition and has had money raised for the MITRE Trust, a charity based at the Musgrave Park Hospital which aims to improve patient services and to fund new developments there from the local Orange Order Charitable Committee and Masonic Lodge. He now hopes to raise more money for the centre.
Mark is still limited to what he can do and has no plans yet to return to active farming or holding barbecues for community groups which he excelled in before his illness. However he feels he is working towards a full recovery and wants to enjoy his job and social activities again.