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motor neurone disease - Carers UK Forum

motor neurone disease

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I am in shock - we have just had a motor neurone disease diagnosis for my husband. Apparently it's a slow progressive type.
I am not sure my husband realises the implications of the diagnosis but I do and am frightened when thinking about how we are going to cope with the next years. At 69 will I have any life left when all this is over?
Anne, I am so sorry that you have had this shocking and horrible news. You must call in all the help you can so that you can cope. Surely your husband will qualify for Continuous Health Care. Try to hang on to some kind of outside activity for yourself and keep in touch with friends so that there will be something to build your life on again.
There is a dedicated charity for advice and support. I've copied this:-

"The Motor Neurone Disease Association (MNDA) is the leading UK charity for people affected by the condition.
The MNDA can give you information, practical advice and support about living with motor neurone disease and coping with the emotional impact of being diagnosed.
The MNDA also run a network of specialist hospital clinics across the UK, where a neurologist who's an expert in motor neurone disease can provide you with further information and advice."
One thing I have read that may be a little comfort, is that MND does not cause great pain.
I wish you well
Elaine
thank you Elaine. The neurologist is referring us to the local hospice for help and I have already sent an email to the Hereford MND branch. We may not get continued health care just yet, but it will happen somewhere along the line. I have calmed down since my original post and realise that having a diagnosis (which has taken 11 months!) is a good thing because it will enable us to receive more help.
Also, sending huge ((hugs))' Anne. I too second the MNDA. A friend of mine, in a very similar situation had a huge amount of support from her local hospice NOT just in the final stages but for some years. We of course will also be here holding a virtual hand.