SIL just diagnosed with Motor Neurone Disease

[BobDear]

She is 46 with 3 DC :(

She says she doesn't want to talk about it and 'it is what it is'.

Six months ago she had a pain in her leg that she thought was a trapped nerve and today on the phone, she just mentioned that she used a scooter to get round Sainsbury last Saturday. I am horrified at the speed of the decline and want to help but don't know how.

I don't know anyone else with it and have no experience. I know it's usually pretty brutal and there is no cure, but I don't really understand the journey as everything online is mostly talking about life-expectancy. She lives in another part of the country but is coming to stay the night next weekend and I would just like to be better informed as to what to expect and what is a realistic expectation of quality of life for her in the near future.

She is not with DB any more but we have remained friends and I still consider her family - but it does mean I can't ask him about it as he refuses to discuss her or what is happening. I know he will be worrying about DC and he will step up and take her to appointments etc but he won't talk. I don't want to pry or ask her questions but I don't want to hide from an uncomfortable conversation if she wants to have it. Any real life experiences would be much appreciated.

One thing you might want to check in a discreet way is if she's getting the financial help she's entitled too. PIP can be fast-tracked etc

As above and also see if POAs are in place, they will be needed for sure

She does have POAs in place, yes.

I don't know about PIP. She worked for a big corporate and I think they have been offered her fair financial support.

I have no idea whether anyone has talked to her about banking her voice or feeding tubes. I wouldn't know how to approach topics like that. I would hope that these are things her medical team would be talking to her about. Would they? I don't want to overstep or instigate conversations that she doesn't want to have, but I also want to make sure she is getting all the advice she can. It's so hard!!!

I have no idea whether anyone has talked to her about banking her voice or feeding tubes. I wouldn't know how to approach topics like that. I would hope that these are things her medical team would be talking to her about. Would they?

In our experience it really depends on how conscientious and confident the HCP is. My dad had one truly amazing HCP as part of his team who would proactively suggest things to think about and teams to engage with - all linked to MND but not his specific specialism. He would then contact the MND co-ordinator looking after dad's care and make sure that appointments were made. Dad wouldn't engage with us about what was happening at all and if we tried asking questions he'd get really upset.

I only offered those pieces of advice just in case your SIL does want to sound out things being offered by her MND team (I really hope they have these where you live). Having an idea of the sorts of things that might be up for discussion is helpful - trying to navigate a person's privacy whilst also wanting them to get the absolute best support is so bloody difficult.

Don't worry too much, she will have a good team around her I'm sure and they will suggest she think about things such as if she wants to be tube fed or not when the time is right
All you can really do is be there for her and the family I think

The best thing you can do is to be there as a friend right until its conclusion, most people walk away when things get uncomfortable. Also as you are a distance, offer to do things like paperwork eg pip which she can apply for, not under special rules (I hope) but they should be relatively easy on the application as it's a firm diagnosis

Thanks all.

I won't be running when things get hard. I have told her that already - I'm here to see it through. What's discomfort compared to what she is going through?

I hope this isn't an insensitive question, but can anyone confirm or deny, that patients whose initial symptoms are around mobility tend to fair a little better than patients whose early symptoms are to do with swallowing/talking? As in slower decline.....?

I am looking for crumbs and I think i read this somewhere but can't find where I read it.

My family member started with leg pain, which is when they were diagnosed.

A year later they could no longer walk and started to lose the use of their hands.

6 months after that they started to struggle with swallowing and speech.

They died last year 2.5 years after the first leg pains.

A friend of mine died from MND in her early forties (leaving a husband and a toddler). She lived for fifteen months after diagnosis. It's such an awful thing, the worst thing. There's no hope, no real treatment and no cure.

What you can do is be there, not make it in any way about you (however you feel inside) and follow her lead. It sounds like you are doing all this already. Poor family.

Voice banking - please check this has been suggested. Everything is awful with this terrible disease, but being able to hear a version of my friend's voice when she 'spoke' made such a difference.

PEG tube likewise, once it's essential then it may be difficult to put in.

If she'll listen, please say to her that there is no point in fighting symptoms and struggling. Take all the help and aids possible, as soon as possible (because even in a matter of weeks she will need more - you don't need to add that...)

I can't confirm what you are asking about, I'm afraid (quite the opposite), but it's such a variable disease that I don't think my experience has any bearing on your SILs.

Once my friend had NHS continuing care, things were still appalling and impossible, but at least not financially catastrophic as well.

I miss my friend who had it so much. Selfishly, I really miss the way in which she made me slow right right down. I always rush, but with MND you can't rush anything. And so long as I did slow down, she was exactly the same witty vibrant fun person she always was.

I'm so sorry.

Hi again, my mum's MND started in her arm, then moved down to her hands, then the other arm, then legs. She died 7 months after diagnosis and had just started to struggle to swallow/speak and was choking on food which was terrifying to watch her get through. In the end she mis-swallowed some water which led to pneumonia and she died 5 days later. It was brutal and I was there with her. I'm so sorry you are going through this.

I am so sorry. I have cancer but MND is worse. My friend lost her son to it aged 41 after two years of suffering.
There are a couple of programmes you might want to watch on bbc iplayer and I think either itvx or 4 on demand. One is mum with mnd and the other about the rugby player rob burrow

We lost my BIL to this horrendous disease. His started in his legs, and he lived two years after diagnosis. In his last months he had a lot of concern for those he was leaving behind so being there for her children will be important.
I'm so sorry you are all going through this, its unimaginably awful.

My sil was diagnosed at age 13 (extremely rare) she has a very slow decline and still doing OK at 42 now but has lost use of her hands and legs

Thank you for the recent updates. It is so brutal and I am so very sorry to those of you who have been caught up in this dreadful disease.

I'm going to visit SIL next week. I saw her over Christmas and the decline was shocking. She can't really stand and her words are very slurred. DB has pretty much moved into her spare room and is caring for her as much as she will let him. He says that she is still very reluctant to discuss anything related to her prognosis/future needs and he isn't fully across what she has or hasn't done. She is getting all the in-house specialist care that she should be getting so we both hope that she IS having these conversations with her medical team, but she just doesn't want to discuss anything with those close to her.

I've told him that given the decline in her speech, he really has to find out where she is with voice banking - she may have done this, we just don't know.

Her DC are trying to be stoic but her youngest is quietly starting to fall apart now.

I have another question. I hope that's ok...

Does everyone with MND end up needing help to breath? I know that a lot do, but is it inevitable that my SIL will end up having to wear a breathing mask of some description? The reason I am asking is because her youngest DC has seen pictures of MND patients wearing them and is horrified by them. BIL did ask one of the healthcare team and they were a bit "oh everyone is different", but if it IS more than likely, then he wants to help the DC cope with the idea.

@BobDear

The person I know who had it had a tracheostomy for the last 3-4 years of their life. Sorry I couldn't say they had a better prognosis. So sorry.

Neither of the two people I knew with MND had a mask except in final hours and before that a couple of hours at a time in the final couple of days.

But both died from pneumonia developed from a chest infection developed from a cold. Of course the cold only (ultimately) resulted in their death because their lungs were so weakened by MND.

One of those people caught the cold from their adult child who was caring for them full time, and that child still hasn't forgiven themselves. The father (the woman's widower) is glad it happened that way for his wife's sake because he believed it shortened her suffering.

I'm so sorry your SIL is going through this. Your family sounds so supportive, and that's especially important for her children's sake.

If your brother/SIL haven't already, it might be worth contacting MNDA about support for the children. They can provide guidance and access to counselling which might help the youngest in particular.

I suspect your sil is aware of what is available but is making her choice of what she wants.

Nebulisers, cough assists and ventilators will all be available via the mend nurse that will be involved.

MND affects people differently, I've seen this professionally and personally.

I would suggest that the most important thing is to discuss what the individual wants and maybe why.

It's a heartbreaking condition and support for those closed will be needed

You could speak to smartbox for voice banking and assistive speech device . They have a range of voices anyway if too late to bank
https://thinksmartbox.com/about-us/

It isn't certain that she will need to wear a breathing mask - likely I'd say but not certain.
However it is tragically certain that her children are going to see and experience many distressing things as this disease progresses and their mum loses functions. I'd strongly encourage getting support structures in place for the children for all the different things that will come up.

My relative also died of pneumonia (peacefully).
I think it was a blessing not to linger on, I know it's what they would have wanted. I hope the adult child you speak of can find comfort in time.

OP, when we discussed voice banking with my relative they did not want it. Their voice had deteriorated by then and there was slurring. They said it was not their voice any more so they did not want to record it. It would also have taken quite some time and effort and they just said no.

Simple tools like letter boards can be used to help with communication, depending on the stage of the disease and how the person is affected.

I'm so sorry OP. It's a cruel disease.

Thank you all for sharing your personal experiences in answer to my question. I don't want to upset anyone by triggering unwanted memories. It's actually quite hard to get answers about questions like this, as the default healthcare answer seems to be "everyone is different". I understand that, but DB and I just want to support the DC as much as possible, so saying "probably yes" is actually much more helpful - heartbreaking as it is.

I’m so sorry OP. Someone in my circle has been diagnosed recently, a similar age to your SIL and also a single parent. She has had great support from the MNDA and also from the local hospice - the children are accessing counselling there.