Patti Lomax is better placed to talk about myasthenia than most as she has been married to two people who had myasthenia gravis. 

My first husband Raymond was in his 60s when he was diagnosed and he had a thymectomy to remove his enlarged thymus gland, procedure was a success and he was able to stop his all medications. 

It was a bit shock to discover my second husband Eric Lomax, author of the famous book The Railway Man, had been diagnosed with MG. I knew it was a very rare condition and just for a little while, I began to wonder if it was my fault, it there was any possible connection but then again Eric’s problems were masked by his injuries from WWII and also he was in his early 70s when he finally was diagnosed.

He had very little energy and his muscles had fallen in his face. I think myasthenia impacted on his psychological status because his mind right up to about two weeks before he died was as clear as could be, it was a really good young man’s mind and his memory was perfect, his recall present and past was excellent and there was so much he still felt that he wanted to do. He got very depressed because the myasthenia told him, oh no you are not!

In 2003 and he was looked after by a marvellous consultant and was really cared for. People grumble about the NHS but when it really cranks up and gets moving they are marvellous.

Even though I was not well myself, having backbone issues, I managed Eric’s care. I would recommend carers to look after yourselves as by ignoring yourself while looking after someone will end up damaging yourself.

We moved to Berwick-upon-Tweed from Edinburgh because there was a whole battalion of men around here, some of the Fusiliers as it was in those days, had been caught and been on The Railway and he knew a few of them and also we both felt that it would be good for him to be in a place, where people would understand him.  Although he never spoke about it openly before, when his book was published he was very pleased that a lot of the men and consequently their relatives knew that he had had a terrible time on The Railway so people were sympathetic a little bit and they took his nonsense a little bit less at face value.  It was a difficult time for me all through but I was very fortunate, I loved him and that makes all the difference.  

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