Bonnybridge couple talk about their struggle with Guilliam-Barre Syndrome

Sheena Lambie and partner Mike Robinson. Picture: John Devlin (132388a)
Sheena Lambie and partner Mike Robinson. Picture: John Devlin (132388a)
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When Mike Robinson took early retirement he was looking forward to spending more time with partner Sheena Lambie.

A fit and healthy man in his early 60s, Mike (67) could not have known a few years later he would be cheating death in intensive care and then facing up to spending the rest of his life confined to a wheelchair with Sheena as his primary carer.

“I retired early and we had five great years,” said Mike. “Looking back, I’m glad we had those five years together.”

The Bonnybridge couple’s world changed forever on January 11, 2010.

Mike said: “I had gone to bed because my legs felt a bit wobbly. I woke up at about 3 a.m. and said to Sheena, ‘I can’t move my legs’.”

An initial examination failed to come up with a diagnosis for Mike’s condition, but a doctor quickly recognised his symptoms bore all the hallmarks of Guilliam-Barre Syndrome (GBS), a disease which attacks the nervous system.

Mike admits he recalls very little about the events that followed as his condition rapidly deteriorated.

Sheena (65) said: “By the time they got him into Stirling Royal the GBS had spread to his lungs, shutting them down. He was in intensive care for about three weeks. The first communication I had with him when he woke up was him blinking his eyes for ‘yes’ and for ‘no’ because he couldn’t speak.”

Mike said “Most people survive this virus, but it travelled right up my body and instead of leaving it came back down and stopped around my waist. I have no feeling from the waist down.”

Mike’s arms were significantly weakened because of the GBS, but his left arm is almost back to full strength and it is hoped his right arm will also return to normal.

He said: “They say it can come back, but after three years I still cannot feel my legs. I went to Edinburgh a few weeks back and they took nerve readings of my arms and legs. The arms gave good reactions, but there was still nothing from the legs.”

“The longer someone stays on life support with GBS, the more damage it does,” said Sheena.

Rather than let his condition and his reliance on a wheelchair get the better of him, Mike has been battling back, building up the strength in his arms with help from committed staff in the rehabilitation unit at Falkirk Community Hospital.

Sheena said: “The first few weeks you’re just in shock. Your life is turned upside down, like someone stole your life and gave you someone else’s. It’s a very scary time.”

“It took me a long time to come to terms with this,” said Mike. “The fact I was going to be in a wheelchair, probably for the rest of my life. You think you will be trapped in the house forever, but there are great services out there like Dial-a-Journey.”

Mike soon started venturing outside his Harley Gardens home with Sheena by his side, pushing him back towards some form of independence.

“I’ve always been optimistic about Mike’s situation,” she said. “I always motivate him to strengthen his upper body and to have some independence. Before the GBS he didn’t really like exercise, but now it is for his own good.

“There’s a fine line between nagging and motivating though, and I don’t want to go on at him too much.”

Carers come into the house four times a day to help Mike with everyday tasks he used to take for granted.

“We are very restricted now,” said Sheena. “We have to have things planned out well in advance before we do things. The first trip we took was to Tesco in Camelon and the staff couldn’t have done more for us.

“If there was something on a high shelf Mike wanted they would pick it up for him. Then we had Falkirk Council asking about issues we were having and we told them about the problems we had with Mike’s wheelchair because of the condition of certain parts of Foundry Road and they went down shortly after that and made repairs.”

From those early positive experiences Mike suffered a setback when he entered a shop in Falkirk that specifically caters for people with disabilities.

“I don’t want to go into the details,” he said. “But I was upset at their attitude, especially when you consider their purpose is to help people in my situation.”

Sheena added: “It did shatter his confidence because every other shop we had been in up to that point the staff had been so nice to us.”

That disappointment aside, Mike remains upbeat and is now setting himself physical and mental goals as he battles back to his old self.

“I was a bowler so I want to do that again, maybe indoor bowling. Before I became ill I was a member of a bowling club and a history society and designed websites for them in my spare time.

“Now I can’t really do that, but it’s just concentration that I lack and I’m getting it back.”

A computer aided designer, Mike had worked in IT since the early 1980s and says he now relies on gadgets, like iPads, he previously dismissed.

“I was always a PC man,” he laughed. “But I can read my iPad in bed.”

The couple, who have been together since they first met in Eastbourne 1997, are looking to make additions to their house including a gantry hoist Mike will be able to operate himself without assistance and a patio with French windows and decking where he can spend time honing the computer skills that are now coming back to him.

And, along with Mike’s fight back to fitness, the couple have a joint goal as well.

“We want to go on holiday,” said Sheena. “Somewhere in Scotland that would have facilities to cater to Mike. We’re researching that now.”

FACT FILE:

1. Guillain-Barre Syndrome (GBS) is a disorder affecting the peripheral nervous system.

2. Ascending paralysis, weakness beginning in the feet and hands and migrating towards the trunk, is the most typical symptom.

3. GBS can cause life-threatening complications, in particular if the respiratory muscles are affected.

4. All forms of GBS are autoimmune diseases, due to an immune response to foreign antigens such as infectious agents. The disease is usually triggered by an infection like the influenza virus, or by an immune reaction to the influenza virus.

5. Patients generally notice weakness in their legs, manifesting as “rubbery legs” or legs that tend to buckle. As the weakness progresses upward, usually over periods of hours to days, the arms and facial muscles also become affected.

6. Well-known people affected by the disorder include former US president Franklin D Roosevelt, ‘Catch 22’ author Joseph Heller, former Chicago Bears player William “The Refrigerator” Perry and former Celtic midfielder Morten Wieghorst, pictured.