Locked in by a rare syndrome

RARE CONDITION: Ken Longstaff with his wife Bev at home

RARE CONDITION: Ken Longstaff with his wife Bev at home

First published in Leader The Northern Echo: Photograph of the Author by , Health & Education Editor

KEN LONGSTAFF was making final plans for Christmas when he went to work on December 22, 2012.

An MOT tester in Darlington, the 54-year-old had had an upset stomach the previous night but otherwise he felt OK.

During his lunchbreak, Ken nipped into a shop to get some lights for the family Christmas Tree.

But when he looked at the packaging he realised he couldn’t read the print. Thinking his glasses needed cleaning he took them off, rubbed them and tried again.

Within a few minutes he started getting double vision so he drove carefully to work – where his boss advised him to go home.

When he got there he told his wife, Bev, that he couldn’t see out of his left eye. They both agreed that she should drive him to Darlington Memorial Hospital’s accident and emergency department.

“By the time Ken had showered and got in the car he was already unsteady on his feet,” recalls Bev.

The couple spent the next seven hours in A&E. During that time Ken had two CT scans which were inconclusive.

Doctors kept him in for the night and performed a lumbar puncture to obtain a sample of spinal fluid.

When Bev went in the following morning Ken looked much worse. While at that stage he could still talk the movement of his arms and legs was erratic and his breathing was laboured.

Within a few hours Ken’s breathing became more and more difficult and Bev started to panic.

Eventually, Ken was transferred to intensive care and put on a ventilator. He was now fighting for his life.

Over Christmas Ken continued to deteriorate and was soon unable to move a muscle.

Doctors suspected that Ken had an unusual neurological condition called Guillain Barre Syndrome but as only around one in a thousand people get it every year in the UK they thought it was highly unlikely.

As Ken deteriorated Bev insisted that a consultant neurologist based at the James Cook University Hospital in Middlesbrough should be called in.

“This was my husband lying in that bed and I was terrified I would lose him and my children lose their father. I was in no mood to mess about,” says Bev, now 54.

Shortly after consultant neurologist Dr Neil Archibald arrived he called the family together to tell them that Ken definitely had Guillain Barre Syndrome.

He said the statistics suggested that Ken had a 90 per cent chance of recovery but it would take a long time.

DR Archibald explained that Ken’s antibodies had gone into overdrive and attacked his peripheral nervous system so severely that he was completely paralysed.

After eight days in intensive care at the Memorial Hospital Ken was transferred to intensive care at James Cook.

In total Ken was on a ventilator for ten months. For almost two months he was unable to communicate and he appeared to be in a coma.

Dr Archibald, who believes Ken is one of the most severe cases of GBS he has ever seen, says Ken was suffering from ‘locked-in syndrome’.

“A lot of people thought he was brain-damaged.

But I kept telling the family, Ken could recover from this.”

Bev can still remember the joy she felt when she saw Ken move his jaw for the first time for months.

Over time, Ken gradually recovered more and more of his powers, although he is still on a neurological rehabilitation ward after more than 18 months in hospital.

Recently Ken, now 56, was able to make his first home visit since he was taken ill. He was thrilled to see his home again and his family, son James, 24, daughter Jaki, 29 and baby grandson Max.

Together with other GBS patients Bev and Ken have helped to set up a new support group at James Cook University Hospital for those affected by this frightening disease.

Called the James Cook Gathering of the GAIN Society, the aim is to help other patients and their families and to raise awareness.

“We want to get the message out that there is light at the end of the tunnel,” says Bev.

To contact the new group, ring Phil Graham on 07788 916166 or email phil@filmar.co.uk The Guillian Barre Syndrome Charity can be contacted through gaincharity.org.uk or by calling 01529 469910.

Comments (1)

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11:36am Wed 3 Sep 14

TRICIA12 says...

I WORK AT JAMES COOK HOSPITAL AND WITNESSED THE STRUGGLE KEN AND BEV HAD TO OVERCOME. THE DETERMINATION ON BEVS PART AND BRAVERY ON KENS PART GOT THEM THROUGH A DEVASTATING SITUATION IS TO BE GREATLY ADMIRED. NOT MANY COUPLES WOULD SURVIVE THE TRAUMA THEY HAVE BEEN THROUGH
I WORK AT JAMES COOK HOSPITAL AND WITNESSED THE STRUGGLE KEN AND BEV HAD TO OVERCOME. THE DETERMINATION ON BEVS PART AND BRAVERY ON KENS PART GOT THEM THROUGH A DEVASTATING SITUATION IS TO BE GREATLY ADMIRED. NOT MANY COUPLES WOULD SURVIVE THE TRAUMA THEY HAVE BEEN THROUGH TRICIA12
  • Score: 13

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