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?

Hi there, my dad had mnd, diagnosed at 71. So sorry you are going through this. Your dad's great attitude reminds me exactly of how my dad was about his illness - their gift to us, if that doesn't sound too slushy. Hope you are ok today.

Thanks again to all. It helps knowing we're not the only ones going through this - it can be quite a lonely time. We have lots of friends round us but very few who have witnessed the decline of a loved one at such close quarters, and it's hard trying to keep things 'normal' with them to some extent.

Dad was due to have a lumbar puncture on Monday but they've now decided against this and they told dh there are 'more pressing' tests to be done which will tell them a lot. So I'm not sure of the relevance of this...? Glad he's not having the LP as they are quite horrible I've heard.

sanfairyann - there's not anything I don't want to hear, tbh. It's a gradual process for my brain I think and I will need to know more and more as time goes on, and I will also be ready to taken things in more this way. I know each case is different, but because of my dad's age, I'm interested to know about timescales, etc. How long between diagnosis and him passing away? Sorry if this seems crass to ask...

On a slightly better note, I opened some of his post at his house today and there was a letter from his pensioners association (he was in the fire service). I rang the chairman to tell him dad wouldn't be attending the AGM and he said he would inform the secretary who would arrange for dad's old colleagues to be told and they would do some visiting. He said they all think the world of my dad

I was really chuffed at this gesture of comradeship. Dad will be too.

sorry - that wasn't very clear: sanfairyann - how long for your grandad? was what I meant

my dad was diagnosed in sept, and died in april 99. it varies of course, but it can progress quite quickly i think .

OK, thanks LovelyDear. I just want to know (if it is mnd) how long we might have given how dad is at the moment and assessing how rapid it's been so far. I know it's an awful thing to even think, but I wish that, if it's mnd, the end comes very soon or that his heart will take pity on him and just give out.

I can't bear the thought of him being fed or not being able to speak, etc. It's not a good day today, I feel very tearful. Probably because it looks like we might get a diagnosis tomorrow.

I spoke to his nurse yesterday and he's got a EMG tomorrow and they've also said they will do a lumbar puncture after all, and this should give them some answers. The nurse seemed to think they'd have the results tomorrow... does this sound right. It seems quite quick. Is she being over-optimistic?

i don't know. i think my dad's diagnosis came about by a process of elimination, rather than anything concrete. His illness's progress was slower than your dad's sounds, and in fact he died suddenly and from a pulmonary embolism, following surgery to insert a drug pump. I have to say we were relieved that it happened quickly and before the weakness affected his eating and speaking, but shocked to lose him when we did. Almost exactly 11 years ago. I just don't think there's a common pattern. Hope tomorrow isn't too awful. Take notes, it will help you as you will find it hard to remember what they say.. This is such a hard part of our lives, but an inevitable one and your dad sounds great.

Thanks so much. Taking notes is a good idea. His nurse today (different from yesterday) said to ring after the rounds tomorrow morning to establish what tests are being planned and then during visiting to collar the doctor and ask my questions then. She's not sure of the results will be available then or not until later. She said they're not used to working with tests like he's having on their ward. I think he's on a mostly renal ward (due to lack of beds).

fingers crossed for tomorrow. thanks again

my grandad's decline was fairly quick. we were told it could be a long time which made it harder for family because sadly neither my parents nor my uncle and aunt felt able to look after him at home for up to 5 years, altho my uncle did try. from diagnosis to passing away was less than a year. he died very quickly of a chest infection but by then he had lost all movement pretty much although he could still swallow.

he was diagnosed because he had some unexplained falls so he was essentially well when first diagnosed.

I hope you get some answers soon and your dad is holding up well. my grandad's decline was not so bad for most of his illness.

How are you OP?
Did you get a diagnosis?

Its a horrible time, and you're right, its a lonely time too.

My dad's decline was over 5 years and, thankfully, he passed away from a chest infection just as he'd got to the stage where he was finding it difficult to swallow. He was 60.
We know he would've preferred this than a life without being able to communicate.

Hi. No news yesterday but we should get some today. He had the EMG and a CT scan yesterday morning. I'm going to ring the hospital now actually then my boss has said to take the rest of the day off and I'll visit this afternoon.

Dad and I spoke about some Big Things yesterday actually which was hard but probably quite cathartic for him. He said he in some ways wishes he was as 'doolally' as the bloke in the next bed to him so he wasn't so accutely aware of his own decline and understanding what would be happening in the coming months. I've kind of steeled myself to receive the news that it's mnd today . will post later.x

So feel for you. One of my Dad's last comments was 'well at least I never lost my marbles!' We're all still our Dad's little girls, and it's heartbreaking to see them like this. It's also hard for them to know they're causing pain to those they love so dearly.

But then again, how lucky are we/were we to have them.

I really feel for you, OP. I used to be a speech therapist working in adult neuro and we saw a lot of people with MND, to assess speech and swallow problems. Lots of our patients went over to being fed via a tube in the tummy (PEG tube) as getting a chest infection secondary to food 'going down the wrong way' is such a common prob.

I'm assuming it is MND - I know that there is no 'test' for it - it's a diagnosis of exclusion. It's a pretty rare disease so lots of GPs aren't very knowledgeable on the subject.

People with MND do keep their 'marbles' though, which is both a blessing and a curse, I suppose.

Do contact the MNDA (apols if you have already) - they are fab and have good funding if he needs a communication aid or other equipment.

Many condolences for you and your dad

Thanks again. Well I'm at home now trying to pass some time before I go up to the hospital later. They wouldn't say much on the phone, just that the doc was with dad at the time, speaking to him about his assessment.

I fully attend, if it is mnd, to make my first port of call the MNDA. Their website is great.

I was just speaking to one of my line managers who is fab and very good at listening. I, ironically, feel more positive today, even though I have a knot in my stomach. I think knowledge is power, isn't it and with a diagnosis we can cope with things in a more controlled way, seeing as the condition takes away so much more of our control.

We're lucky so far that dad hasn't lost any speech and is eating well at the moment. It kind of makes me slightly hopeful that it won't be mnd.... but then, something is making him deteriorate before our very eyes, and whatever it is, it's awful to watch, and awful for dad to have to experience.

Whatever it is, would we have to pay for nursing care if dad wanted to go home?

i meant to say intend

Hi, hope your visit to the hospital has gone ok, and that you've had some of your questions answered, or at least, can begin to absorb what is happening to you all.

It's great that you have a supportive line manager. My lovely colleagues and my rather mundane job were really significant in helping me through my 'dark years' around my father and then my mother dying even if it's just a case of providing a distraction and a change of scene.

Hope all is well OP...
Sorry, I don't know about the nursing as my mum loked after my dad. There will be lots of help he'll be entitled too.

Ajandjjmum your post made me cry . Its so true.

you shouldn't have to pay for nursing care if he wants to go home but it takes a long time (ime) to set up the systems needed. one of the problems with mnd is having to be 'one step ahead' of each stage - the nhs doesn't work that fast. he can have a necklace thing in case he falls so he can call for help, have the house assessed for changes, nurses am and pm to get him up and put him to bed if needed etc. but you might be better off if you have the money, paying for some things rather than waiting. you can rent a lot of equipment rather than buying eg those chairs that lift you up and out of your seat/stairlifts. also definitely definitely approach the mnda for advice and equipment. they can also help by speaking to the gp or any nurses he has to tell them more about mnd

Thanks for all the advice and support.

I don't know why I was expecting a final answer today: I should've known better really.

We spoke to a young female doctor who openly admitted that neurology is not a field that she knows much about. She told me the neurologist had been to see dad last night and given him the results of some of the tests, as follows:

MRI came back clear

EMG showed muscle wastage, due to nerve damage throughout the body but focusing mainly in the legs and arms at the moment. There is no 'outward' reason for this, e.g. trapped nerve, so it is a 'condition' that has cause this rather than an outward reason of some sort.

CT scan was mostly ok, BUT it picked up an abnormality at the base of his oesophagus going into his stomach. It has expanded the base of his throat but they don't know whether this is an obstruction or a swelling, so they plan on doing a scope with a camera down his throat tomorrow.
God only knows what that is, then...

But what the female doc did say was the the neurologist has not even mentioned the poss of MND to her which she would have expected him to if this was a suspicion, which is rather surprising...?? But I'm not holding my breath; I know this could be an oversight and it doesn't mean that it's not that.

anyway, if they don't get any more answers in the next few days they will be sending him to Birmingham QE where they have an excellent neurology dept. Hopefully he can have tests there and then come back here, as this will be a nightmare for visiting him, what with the dds to look after and sort out, etc.

I am ringing the neurologist tomorrow in the hope I can meet with him on Thursday when he's next in to our hospital.

so no real answers yet, again...

Good luck, the waiting is the worst bit.

sounds like they are being thorough now they've got going. good luck with it all. hope your dad's bearing up ok

I hope you got to see the neurologist.
How are things today?

Good news - GREAT news, really - the neurologist saw me yesterday and he is fairly convinced it's not mnd, due to the fact that dad's nerve damage is mostly 'sensory' (although I don't really understand what this means in relation to mnd, but he's the expert...!)

so that's a HUGE relief. Thank you so much for the continued support on this thread - it has been invaluable.

I don't feel I can be totally euphoric, even though I'm obviously delighted it's not mnd, because they still don't know what it is. There's a 25% chance that they will never find out either. There's a slim chance it will be a condition that will respond to treatment and may get slightly better, but there's also a fair chance that dad will be disabled for the rest of his life.

The neurologist is waiting for more results from bloods that have to be sent away but in the meantime they are hoping to move dad to a community bed. He'd like to go home, but I don't see how he can (and neither do his nurses)... in fact, I can't see how he could ever go home again without round-the-clock care.

anyway, main thing is that he probably doesn't have mnd... the other stuff will just have to be dealt with as more tests come back and care plans are sorted.

Fabulous news, I can't imagine how you were feeling. Fingers crossed for more answers.
Now, the sun is shiny and the birds are singing so I think you deserve a glass or something nice.

Great news!!! I have been following your thread, am really very pleased for you. Sounds like he's getting good care from the hospital and fingers crossed you get some clue on what's causing it and then they can treat it. Good luck

I feel almost shell-shocked. I was sposed to work late last night but my boss just sent me home and told me to get my 'jamas on and go to bed. I slept straight through -woke up for the dds obviously- but dh took them to school and I didn't get up til 11.30!!!

It does feel like I've been underwater with all the worry and now I can breathe again. Dh is up there with him now at the hospital. Onwards and upwards for the next leg of the journey.

Thanks sooooooo much for the brilliant support.
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