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Original poster

SIL just diagnosed with Motor Neurone Disease

114 replies

BobDear · 29/09/2022 18:35

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.

OP posts:
mumof2many1943 · 29/09/2022 21:11

What devastating news my heart goes out to all of your family. No advice except give her support. Vile disease just hope there will be some new drugs soon, take care.

Original poster
BobDear · 29/09/2022 22:21

Thank you for your kind post.

It's so difficult to process. I don't understand how the disease progresses,what to expect or how to help but it is an awful thing. There was something on the news the other night that looked promising for a small number of patients but I have no idea if SIL falls into that 2% of people that this breakthrough might help.

OP posts:
Munchyseeds2 · 30/09/2022 13:17

I am so sorry, it is a horrid disease
A family member recently passed away from it but they were much older.
From what I could see each case is different in progression
You could try talking to the MND society for advice?

lingle · 30/09/2022 18:54

I hope it goes as well as can be expected this weekend OP.

great idea about getting advice from the MND society. You have your needs here - you've had a shock too - but your sister in law is not the person who has the job of meeting your needs. does that make sense?

Oneearringlost · 30/09/2022 19:12

Oh My. You sound so lovely. Definitely advice from MND.
But the best thing may be to put your arms around her?

Isittimetogohomeyet · 30/09/2022 19:18

Definitely speak to the MNDA, they are incredibly full of advice and guidance. Hopefully someone from there has already been in touch with your SIL and is supporting her and the children.

Original poster
BobDear · 30/09/2022 19:32

Thank you. I've been on their website but will give them a call.

It's really difficult to know how to talk to her. I have a friend with cancer and I can manage that - there is hope and there is treatment. I ask how treatment is going and remind her that I am here for her, and then we can talk about other things - I take her lead, but we can talk about life outside of cancer because there IS life outside of cancer.

But this feels different. The trajectory is so brutal. At some point, I'd like to make some kind of offer/promise around stepping up regarding the DC - whether it's a commitment to take them on holiday once a year, to help with University, to have them every Christmas, or just commit to a more general but permanent presence in their lives - but I am worried that doing this sounds like I am 'writing her off'.

I just don't know how to navigate it and what to expect when she stays.

OP posts:
AndreaMaisey · 30/09/2022 19:43

Very sorry to read this. Unfortunately I have first hand experience of MND as I lost a good friend to it.

The charity were amazing.

Best wishes.

Piffpaffpoff · 30/09/2022 19:51

I have indirect experience, through supporting a friend who was in your position. My advice would be you simply have to listen at this point - and if she doesn’t want to discuss it with you, you have to respect that. She might want to further down the line, and that would be the time to make any suggestions/commitments around the children. In the meantime, find out all you can about it so that when she does want to talk, you can do so from an informed position.

MND Scotland website is a good source of information, alongside MNDA.

crumble82 · 30/09/2022 19:52

I follow a blog on Facebook, she’s called Mummy with MND. I think she’s about the same age as your SIL with one child and it’s an honest and very beautifully written account of the progression of the disease and the campaigning work she has done to get MND research funded. I’ve learned a lot about MND from her and I recommend it.

Original poster
BobDear · 01/10/2022 17:39

Thanks @crumble82 I've found the blog.

It's pretty heartbreaking to follow (although the writer is amazing) but it has given some encouragement around timeframes and a bit of an idea of when things might happen and what they might be.

OP posts:
BuddhaAtSea · 01/10/2022 17:44

OP, look up ‘When the body says no’ by Gabor Mate, it’ll help.

TwinkleToesStrikesAgain · 01/10/2022 18:13

My father was diagnosed a few years ago (in his early 70s) originally with a slow form of the disease but it turned out to be rapid. The progression varies so much person to person - his legs remained quite stable for the first year but his hands and swallowing reflex was impact quite quickly. His decline towards the end was incredibly rapid.

I can offer no advice. There's a very recent drug that looks to offer a significant advance but I don't know if they enrolling into trials

Theoldwrinkley · 01/10/2022 18:30

My aunt died of this. My next-door neighbours sister died of this. Both were older ladies though. And the progression of the disease with the 2 patients bore little resemblance. In a way (apologies if this sounds insensitive) the lady who lost her mind with it was in a 'better' place as she was unaware of the deterioration of her physical capabilities. My aunt was compos nentis until the end, and requested a large dose of morphine from her GP. She was a nurse so knew the consequences. But this was 20 (?) years ago.
My heartfelt sympathy to you and your SIL. Nothing can relieve the sadness behind this diagnosis, and with children it is tragic. MND getting a generous donation in my will, and my brother has left his whole estate to them I think.

supernaturalbookworm · 01/10/2022 18:35

So sorry to hear this, it truly is a cruel disease and each case is so very different.
This charity set up by my brother in law is something you or she may want to look up, they can help with creating memories for those with mnd or the family affected challengingmnd.org/

NormalNans · 01/10/2022 18:51

My sister in law died of MND about 3 years ago. It was about 4 years between first symptom and the time she died. She wasn’t in the UK so I can’t comment on UK care but there were absolutely times that she couldn’t stand anyone near her and needed her space, other times she was heavily reliant on people for domestic and self care, including feeding.

Does she have anyone who will be an informal carer? My brother needed an ear, an extra pair of hands and respite particularly towards the end.

RainbowSlaw · 02/10/2022 16:00

OP, if you have a Times subscription, an acquaintance of mine from university who died in his early 30s from MND wrote a monthly column for them about living with it - search Gordon Aikman, the Motor Neurone Diaries.
I would also highly highly recommend a recent documentary by Lucy Lintott "Being Mum with MND" - she has another earlier one but I can't see it available to stream sadly.

Gordon and Lucy show how very different progression can be for each individual - Gordon lost his life within a few years, whereas Lucy is managing some semblance of family life many years on.

I'm so sorry - it is a cruel cruel disease.

Mythreeknights · 04/10/2022 13:53

OP - have a look at this link for clinical trials: www.mnd-smart.org/

Original poster
BobDear · 04/10/2022 17:10

Thank you all - it's good to have all these resources and I will visit all of them. I don't have a Times subscription but perhaps I can do the month free trial or something...

Special thanks to those sharing personal experiences. It's a fucker of a thing and I can't think of a more unkind - not quite the right word - prognosis. I used to think dementia was the worst (having nursed by 'far too young and smart' mum through to the inevitable end) but MND that leaves your mind completely aware of what your body is refusing to do, is worse I think.

She will have support. Her parents are still reasonably young, her oldest DC is 17 and DB is going to offer to move back in to the spare room for as long as she wants (or doesn't want). It was a fairly amicable split he is a good person so will try to do right by her.

I still feel shocked. She is so young and smart and undeserving to be dealt such a cruel and random card.

OP posts:
Original poster
BobDear · 04/10/2022 17:12

Oh - i meant to say - my OP was misleading. It's this coming weekend that we are having her to stay. At least i feel a bit better informed.

OP posts:
Tickledpickled · 04/11/2022 21:17

My Dad was diagnosed with MND last September and is now very much near the end of his life. It’s been a hugely traumatic and torturous 13 months. He lost his voice first, then his mobility.

Nat6999 · 04/11/2022 21:28

My auntie died from MND, she started with a dropped foot & neurologists thought she had MS but after all the tests it was MND, she lasted 19 months from diagnosis.

PermanentTemporary · 04/11/2022 21:37

I only have one area of knowledge with this and was going to type some advice but tbh it's not the time to come out with lots of info. You must be devastated and so must she. I think it's great that she's coming to stay with you and I hope you can connect.

I hope she will have a clinical specialist nurse contact from the neurology clinic. They tend to be the ones who put her in touch with the people she will need.

Original poster
BobDear · 05/11/2022 19:56

Thank you all.

She came to stay. I was shocked at her deterioration but I hope I hid it well enough. She is struggling to walk - her gait is very sloped - and her words are slurred.

We didn't talk about it much - she made a few gallows humour references and confirmed that she didn't fall into the 2% who have a glimmer of hope from with the new drugs that are being talked about. She seemed very pragmatic - she doesn't want to meet other people with it she asked why she would want to see people who are further down the line than her and I sort of got that) and she just wants to get on with her life. I just tried to take her lead and follow where she wanted to go. We mostly talked about books/films/family.

I am going to visit her in a few weeks and am hoping that she won't have gone noticeably downhill. I am so very fond of her and it is so shit.

I would still be grateful for stories - even bad ones. DB won't ask her anything, and I think we need to know what to expect.

Thank you all for sharing your heartbreaking tales of MND. It's a fucker isn't it?

OP posts:
1001Daffodils · 05/11/2022 20:28

I'm so sorry your SIL has been diagnosed with MND. I honestly think it's unimaginably cruel.

My dad lost his battle this year, less than 18 months after being diagnosed. He was mainly a bulbar progression patient so lost his ability to speak and swallow. This meant an assist device to communicate and a feeding tube for medication and food.

He was very similar, didn't want to know what was next and to be honest, it progresses so differently in people it wouldn't have made much difference.

The frustration was massive with dad, he was still a vibrant person behind his body failing him, being locked behind a mouth that couldn't talk and a body that wasn't strong enough to carry him more than a few steps was horrendous. As was the way people judged him out and about. The responses varied from believing he was drunk to thinking he was mentally incapable. Absolutely heartbreaking (and I may have torn strips off a few people!).

In practical terms, if her voice is still clear enough I'd strongly recommend voice banking if she's up for it. They can use her voice for the assist device instead of it being a stock voice. Also when it comes to the feeding tube, earlier is better if it looks inevitable. It's truly scary how rapidly a lack of nutrients can weaken someone...unless she wants to take the path of no intervention it would be better to have the tube inserted before she gets too weak.

Sending you and your SIL strength and support. MND is fucking evil.