Motor Neurone Disease

My husband has just been diagnosed with motor neurone disease. I wonder does anyone know anyone who has got or has had this disease.

My husband is gutted as he has only a short period to live normally because breathing, talking, and eating will soon be very difficult. We have read a lot of stuff which is very depressing as the prognosis is just awful.

We wondered if there was a way of living through this without feeling horribly low. I also want to ask will this feeling of loss go away so that we can lead a normal as possible life?

Re: Motor Neurone Disease

So sorry to hear this Cate
There must be support groups which would be a big help to you, I'm sure people here will know where to get the help and support you are going to need.
So very sad for you and your Hubs x

Re: Motor Neurone Disease

Have you looked at this site http://www.mndassociation.org/for-carers/ so sorry you have to go through this why do things always happen to such nice people

Re: Motor Neurone Disease

Thanks for that link. I just don't know. If he had cancer maybe he could be cured and yet cancer has always been my greatest fear. If a doctor said we will give you extra time if you stop drinking or eating certain foods or something that would mean something. There is nothing we can do just wait for his body to just not work anymore.

Re: Motor Neurone Disease

Have you tried this one Cate .....



http://www.patient.co.uk/support/mot...se-association

Re: Motor Neurone Disease

Cate I am so sorry to hear about your husband, it must have been a terrible shock for both of you..xhugsx

Re: Motor Neurone Disease

I'm so sorry to hear this Cate. It is a very difficult diagnosis to get, but I guess my advice would be to live each day for now rather than researching the future too much. Not easy, but sometimes looking at things on the internet can be more destructive than constructive in terms of your feeling of loss.
I would agree that contacting support groups might be useful. Your GP should be able to give you information on what is available.
xx

Re: Motor Neurone Disease

Cate, I'm so sorry to hear about your husband's diagnosis, it must be very difficult for you both to come to terms with

*hugs* x

Re: Motor Neurone Disease

Hello Cate so terribly sorry to hear your news. My brother in law had this disease and I think the way they treated it was to live for the day. To live as normal as possible for as long as possible....... as no-one knows what the future holds for any of us.
Prayers and hugs xxx

Re: Motor Neurone Disease

Thank you ladies so much, you are all basically saying what we have decided. To make each other laugh each day, to deal with each day as it comes but not to waste time in feeling destructive or negative thoughts because that is the way down.

I am going to see what the MND forums can help me with for instance they may have news of new treatments. I must try to be strong. So far each time I have tried to tell anyone even over the phone I have cried. I knew life was short but...............however, as you say we don't know what each day holds for us.