Hard to believe

So this time last week our brother Martin was fit and reasonably well, apart from the left overs of a bout of food poisoning which started during a recent family holiday in Turkey.

Now he's in a high dependency ward with a long road to recovery in front of him.


It's been a long week and still pretty hard to understand how someone so fit and young (ish) ;-) can be struck down by a disease that I don't think any of us in the family had even heard of.

The disease is Guillaine-Barre Syndrome or at least the Miller-Fisher variant of it. It's a serious disorder that occurs when the body's defense (immune) system mistakenly attacks part of the nervous system. This leads to nerve inflammation that causes muscle weakness.

Does that make me sound like some sort of expert...not really, it doesn't take much to source the info via a search engine.

What I do know is that Martin has an extreme feeling of pins and needles in his arms and legs, he has very little muscle strength, he isn't able to talk and can't see. He's wired up to every form of observational monitoring you could think of. The only way I could describe his condition is to liken it to someone who's been on the worst bender you could think of, with no ability to do anything for themselves. His speech is incredibly slurred and mostly impossible to understand.

Probably the most distressing thing that any of us have experienced.

It started with double vision on Sunday 11th, by Monday he was unable to stand although his speech was still ok.

He was rushed into hospital having been checked for a stroke and cardiac failure which were ruled out.

He was admitted to an isolation ward due to the possibility of spreading what could have been a viral infection. By Tuesday his speech had become very slurred and movement was becoming more and more difficult. His sight had also deteriorated badly.

Following a lumber puncture, MRI and CAT scans plus various other tests, Martin was moved on Wednesday to a high dependency ward as his condition had worsened significantly. By now his sight had completely failed. All the family gathered at the hospital that evening....not a good time.

By this time we were learning that the potential diagnosis was Miller-Fisher Syndrome. It sort of helped to at least know there was a diagnosis and hopefully treatment could start. I don't think any of us realised at that point the full implications of what is a devastating and shocking illness.


So, one long week later and based on our Internet expertise we have some idea of the long road ahead. It might be a long road but we know where we're going!


Martin is likely to have some big gaps in his life over the next few months but hopefully this blog will help...