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?

Oh dear sounds horrible poor you and poor your dad, MND is not good but until you have seen the consultant I would just take one day at a time. xXx

Nothing to add, I'm afraid, but just wanted to say that I'm very sorry to hear your dad has deteriorated.

Sorry to hear this. My dad had mnd.
I'll try to answer any questions you have. Its heartbreaking and grim. Maybe you want to wait for a diagnosis first before you need to hear anything more about it? Hopefully you wont have to. xx.

please get in touch with the MND Assoc - they are amazing and will provide you with all the info and support you need.. I have experience of them and was very impressed with their care..

Thank you. Like I said before, it's like being in limbo at the moment waiting for a diagnosis.

Have already been on the MND association website - looks very supportive. am hoping I won't need them though, of course...

Sorry if this is an awful thing to ask... but is it 'normal' to just switch straight to thoughts of Dignitas clinics and assisted suicide? I just can't imagine my dad allowing this to happen to him. He's always been of the school of thought 'shoot me if I ever get like that' type of thing. He hates seeing us upset and it would be excruciating for him to go through this. I don't mean to upset anyone who has already experienced a loved one going through this though... I know for many people it's just something to be borne and there are no alternatives. I know we're not the only ones and I don't mean to sound melodramatic - sorry.

I can't stand the thought of the waiting we have to do in the next few weeks.

I dreamt last night that I was climbing between floors of a really high building and the stairs kept crumbling away

Its a very distressing time for you. Waiting for a diagnisis is horrible.

I think your thoughts are very normal. Assisted suicide was never an option in our case due to religious views, but I always hoped that something else would take my dad rather than getting to the final stages of mnd.

I don't want to go on as I don't want to depress you unnecessarily but I'll chat to you about it if you want to. xx

Dad's been round today and his mobility really is getting much worse. He couldn't get up the step from kitchen to dining room and dh had to practically lift his legs up for him and take the weight of his torso to get him up to his frame. And we had to give him a cushion at the table to raise his arms up so he could eat, as he didn't have the strength to get his knife and fork up to his mouth .

So what I'm thinking is that it kind of must be MND or something similar due to the rapid progression of the condition. It's getting worse every day. His speech is still fine and his chewing is good, but my friend whose FIL died last year of MND said that this was one of the last things to go.

I think I need to get my head round the fact that MND is looking more and more likely. Is it?

and just now he complained of pain in one leg which was like a burning sensation, very intense which then subsided and left his leg feeling very numb. Does this sound familiar to anyone?

sorry you and your family are going through this

I think it's awful that you are having to wait 4 weeks to be seen by a neurologist.

I had a friend with MND and she was seen very quickly when the symptoms started.

Can you ring the GP and say your father's condition is deteriorating and he needs to be seen sooner?

I could try... but gp told us last week that neurology is notoriously 'heartless' in this way. He said if you were suffering from a brain tumour and there was something they could do, they would allow an emergency appointment (as in a few days) but with suspected mnd -and I suspect with dad's age- the attitude would be that a few weeks will make little difference .

Dad has his mri tomorrow morning which dh is taking him to. I will get dh to see then if anything can be done given the poor state of dad's mobility and the fact that he lives on his own. Surely the people doing the mri have the power to influence or recommend urgent appointments?

Hi. Sorry to hear things aren't looking good.

I think we waited almost a year before we got a diagnoosis so your gp may be right.

How did the mri go? How's he doing now?

Thanks Squid. He had the mri on Monday. Results next week.

Things have deteriorated further - so much so that we knew we couldn't wait 5 weeks for an appointment with the neurologist. The gp on duty suggested that if we thought it was bad enough we could try to admit him to hospital and then he'd get all the tests much quicker.

He has been so bad the last few days that he couldn't even walk with his frame. He looks so tired, just from the effort of getting up and dressed in the morning . So we managed to get him to the gp this afternoon; he was assessed and she sent him up to hospital. Dh is there with him now, waiting for a bed.

Would MND be this rapid in its progression? It all seems so quick. and the gp we saw today said she thought it would be very unusual for someone his age to develop mnd.

Nothing to add, but fingers crossed for you and your dad. it seems to me that you are very fortunate with your choice of DH too.

Thanks.
(No luck involved with bagging dh - it was a long hard slog getting him to realise I was the woman of his dreams! Luckily he woke up to it eventually and here we are 12 years and 2 dds later!)

I'm visiting dad this afternoon. Dh didn't get back til 1am ! Dad finally got a bed overnight and slept well. The physios were with him when I phoned this morning. I also spoke to the OT and she said, whatever the diagnosis, it is unlikely dad will be able to return home alone, so that's the end of another era.

I hope he at least gets a rest and then we find out what this is. He turned to me while we were in the car outside the doctor's yesterday and said simply 'well this is a right pain in the arse isn't it?' and then squeezed my hand.

He's being so brilliant.

Aah your dh sounds fantastic.

The progression you're describing does sound very rapid. Peoples experiences of mnd have been different though.

How did the visit go?

glad to hear he's getting some help now

He was in good spirits (as usual), thanks. He's now on a ward with only 2 beds and looks comfy. He was joking that he'd been asked if he wanted a bed by the window and he said yes and then realised the view was of a brick wall!

They had him sitting up in the chair next to the bed and he looked ok in the circumstances. Think he will be better when he's had more rest. He's being prepared for a lumbar puncture in the next few days which means he has to stop taking warfarin, so I hope that doesn't affect his heart problem.

We should know more in the next few days. Fingers crossed. Thanks for asking: means a lot at the moment.

btw, if it is mnd, would he be allowed home as long as he had round the clock care? Would nursing care be triggered off in that curcumstance?

My friend who lost her FIL last year with MND said he had round-the-clock nursing care in the last stages which allowed him at least to stay at home.

Dad's OT said he certainly wouldn't be allowed home alone in his present state as he's at a high risk of a fall when alone at night. He was v.pee'd off to hear this, but he knows he can't cope now

My Nan had MND. Also willing to talk about it if you want.

lol at the view from the window.

Fingers crossed for him.
Keep posting here and I'll keep chatting to you. I've been through all the emotions you can imagine with my dad so feel free to say whatever you want. I don't log on every day but I do most days.

Thanks so much Scorps and Squid.

Likewise my logging on will be as and when.
Will post when anything new to report or I need to give dh a break from listening! x

hi there, so sorry you're going through all this. my grandad also had mnd, diagnosed in hosp after a series of falls. if you do get a diagnosis of mnd, do contact the mnd assoc they will give you a contact and you can speak on the phone about any queries. I found them very helpful. My experience was that we had to advocate for him on everything - getting nursing care sorted, medication etc - and the more you can be involved in pushing for good quality care, the better. take care x

Thanks, sanfairyann. How old was your grandad whe he was diagnosed, if you don't mind me asking. The gp kept saying it would be rare in someone as old as my dad (84).

no it is a common age for it to be diagnosed, we were told, sorry if that isn't what you want to hear. he was 84 when diagnosed. hows he doing today?

My Uncle died from MND. I can put you in touch with my cousin if you wanted.