help needed with mnd sufferer

[ianjudd]

hello all

My father has been diagnosed with the rare MND condition which is called 'flail arm' syndrome or 'man in a barrell'.

I live in Essex England and am wondering if there are any other out there in the world who have been diagnosed with this rare condition because the specialists in England really do not know a lot about this.

If there is any one who knows about this condition i would be very happy to get in contact with as just to find out what make their life easier.

Many thanks IAN

 

[Al]

Hello Ian. I had never heard of this before. I found an interesting article about it. Here's the link. Not sure if you've seen it before.
AL.

http://jnnp.bmj.com/cgi/content/extract/65/6/950

 

[ianjudd]

Thank you Al

many thanks for your reply showing me this article.

It shows how little there is out there about this form of als as finally my father has been diagnosed with this after a long time being told one thing and then another, does this sound familier.

My mum just wants to find out as much information about this as has been going on for some time an after hosptial visits, tests etc she wants to find out wether there is "light at the end of this tunnel" for my dad.

All the best IAN
From England