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Alanwig
2nd June 2011, 16:38
My friend was diagnosed in September 2010 and given a prognosis of 12 -18 months, the disease has been pernicious and rapid. We had a a good chat about his prospects and it became evident that rather than just accept death, he wants to fight and stay alive even when the disease won't permit.

I don't know how practical or even feasable this is but I promised him I would find out, so has anybody any experience of an MND sufferer being placed on a life-support system either through the NHS or privately, here or abroad.

I assumed that the effects of MND are irreversible but he maintains a sliver of hope, he is going to raise the subject with his GP/Care Team but sometimes answers reflect resources rather than potential.

I know dying is a sensitive issue for all but if he/me are simply being unrealistic, don't be shy, tell us straight.

All views welcome, cheers.

Alan

Graham
2nd June 2011, 20:08
Hi Alan,

I applaud your friend's fighting spirit and that PMA alone will prolong his life. It is a tough road but there are many of us on this journey able to encourage us onto the next base.

I believe the main cause of death is respiratory failure, but fellow battlers survive on ventilation for years.

Best wishes

Graham

Alanwig
3rd June 2011, 01:33
Hi Graham,

Many thanks for taking the time to comment. I can't fault his spirit, the advice he appears to be getting is once respiratory failure happens that's it. I guess it's the ethics v resources question. I must read up more on MND as I don't have the knowledge and understanding to know if sufferers artificially respirated have the ability to communicate and maintain some quality of life.

I've heard in the U.S. they will do this providing you have the medical insurance to cover it.

He's having a face to face with his specialist and his care team soon so I think he's going to fire a few questions at them and see what the responses is.

In the meantime, we're watching a replay of the Monaco Grand Prix and having an argument over Lewis Hamilton's driving ability and post race interview. life as they say , does go on.

Cheers,

Alan

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