Can anyone chat to me about motor neurone disease please?

[oneofsuesylvesterscheerios]

My dad has been referred to a neurologist about his rapidly deteriorating mobility which was at first thought to be a stroke (he has heart failure and a large clot but is being controlled well with meds). However, mobility has got much worse and he has gone from being fit and able in Nov to not being able to walk without a frame now and is having problems with grip and weakness in hands, arms and legs.

His GP mentioned MND for the first time on Friday and said a neurologist will be able to diagnose but he won't get an appointment for at least 4 weeks. I feel like we're in a horrible limbo and although I know we can't do anything until we know one way or the other, my mind is racing ahead and thinking the worst.

Dad is being very chipper and is telling me not to worry. But a friend who works with elderly folk said to me this weekend that the rapid deterioration is not a good sign at all. My mind has gone to mush and I feel numb.

Dad lives on his own but we live not far away. He is desperate to stay independent. I feel overwhelmed with it all. I know MND is grim. and I don't want a 'diagnosis' as I know no-one can do this with so little info. I just want some advice about what happens.. and maybe even if there might be other things it could be?

i'm so pleased for you. hope your dad makes a good speedy recovery

Hi - an update. Although my dad doesn't have MND, from the tests he had in April/May, he definitely does have a degenerative disease that is wasting his muscles and will result in his death. Going by the rapid onset of his current state we might not have an awful lot of time left, but we don't know exactly how long he's got (does anyone with something like this?) and we're still waiting to see if a nerve biopsy will give us a diagnosis... but he's finally come home after 3 months in hospital and intermediate care and it's very clear to see how much he's gone downhill since I last posted.

He's now in a wheelchair full-time and his hands and fingers are giving up; arms are very weak; he can no longer stand and has to have carers to get him up and dressed and to put him to bed at night. We are coping in the day with meals on wheels and he can still lift a spoon to his mouth and drink from a cup with a straw... for now.

His lovely lovely GP came round to see him today and very clearly spelt out that this is a terminal condition we'e looking at (we knew this really but he's the first person to have said it out loud) and he's referred us to the hospice.

I've kept it together this afternoon and tonight - so that I didn't upset the dds and also I arranged to see some friends tonight to keep my mind off it. Dh is away unfortunately and not back til Monday. I haven't told him about the hospice or what the doctor said as I didn't want to spoil his weekend. I also haven't told my brother who is abroad. I think he will go to pieces and I don't want that responsibility. Dad said today we just have to take each day as it comes. I feel so numb.

The hospics should be able to offer lots of help and support, thinking of you.

Thanks. We have to wait for the hospice nurse to come round next week now and I will ask him/her some questions then.

But does this now mean my dad would be a patient there when he is no longer able to feed himself? (which could be only a matter of weeks) or would we just step up the care at home or arrange full-time care there? I don't really know how it works.