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.

Thanks for checking. It was ok but I did find it difficult and uncomfortable. In the end I took a little watercolour of a childhood landmark that we both used to visit as we are from similar area, and a hotwater bottle shaped like a frog (family joke).

I just said from the off that I knew I wasn't always going to understand what she was saying - and would she rather I kept asking her to repeat until I got it, or do something different? She managed to convey (mostly through DB) that we could give it a go a couple of times but that I should mostly just tell her funny stories about the DC and suchlike. So we did that.

She is very thin and frail and has no control over her hands. I am so angry for her.

@BobDear I've just read your update. The last paragraph brought a lump to my throat - I feel angry too, for the cruelty of this condition and the effect it has on families. You did all the right things - just taking the visit as it came as it's difficult to know how it will be beforehand.

Thank you for being so kind to your SIL. I'm sure she and your DB really appreciated your visit. Please visit again when you feel strong enough, but look after yourself. I am wondering if it would help you to contact the MND Association? (This may have already been mentioned, apologies if so). I'm sure they will support you if you need someone to talk to who isn't family.
Sending hugs 💐

In the interests of completion for those of you who were kind enough to support me on this thread, an update.

My gorgeous SIL died in February. She got a chest infection that wouldn't shift and was admitted to a hospice. She was then miraculously sent home when a combination of drugs seemed to be working, deteriorated after a couple of days, returned to hospice and died within twenty-four hours with her DC and my DBrother at her side. Even though I knew the trajectory, the usual timeline and that there was no chance she would 'beat it' the actual end was sudden and shocking.

We are all still grieving and navigating this new life without her and I miss her terribly. DBrother is distraught but holding it together for the kids who are each dealing with it differently.

Thank you to everyone who shared personal stories with me and at least prepared me somewhat for what to expect. MND really is one of the cruellest diseases and my heart goes out to anyone affected by it.

I'm so sorry to see your post @BobDear . It is kind of you to update the thread, albeit with the worst news. It truly is the shittiest disease.

I'm so sorry. Sending love to your family x

I am so so sorry. It's a desperately cruel disease and it doesn't get anywhere near the support or fundraising it deserves.

I’m so sorry for your loss.

@BobDear Very, very sorry to hear this. It's an awful disease for people to cope with, and I hope you can take some comfort in knowing that you wanted to do your best for your SIL and family. Thinking of you all 💐💐

I'm so very sorry to hear your update, I've looked back at this thread from time to time to see how you were all doing. There is very little discussion of MND on MN compared to other life limiting conditions so I always look out for updates from those that have posted in the past. I'm so sad that the inevitable has happened and so suddenly - another cruel twist of MND. We are 3 years into the MND journey in this house, with teens too. It's unbelievably hard for all involved, my love goes out to you, your DB and his children.

Thanks all - I can't tell you how helpful this thread was.

I am mid-fifties and have lost people who are far too young to die from a variety of things - cancer/heart attack and suchlike. MND has been by far the cruellest of things. A slow death-march with no hope for reprieve and constant decline of every function except the ability to be 100 percent cognet. A truly wicked thing.

@Atlas12 I am sorry to hear that you are in the thick of it. Sending you love and resilience in spades.

Sending you so many thoughts and so much recognition. The horror of it all doesnt pass easily… look after yourself x

I watched my father disappear, albeit from a distance, due to MND. It really is a cruel disease and obtaining support is hard. I hope the OP can find some relief in that the suffering has finished, but the family and friends left behind will have a hole in their lives.

So sorry @BobDear I am thinking of your family.

I think of my friend and colleague who died from MND ten years ago, very often. She left a husband and a three year old.

It's the most awful, relentless, brutal and hopeless disease - the worst thing in the world that could happen to anyone. I wish there was more focus on it.

💖