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Motor Neurone Disease

(13 Posts)
Ohdeargawd Thu 12-Nov-15 19:58:10

I posted in General Health too but perhaps this is a more appropriate place. My mother has just been told her neurological condition (4 months now) is most likely to be MND. Until today all i'd heard about MND was the ice bucket challenge and Stephen Hawkins. She has developed depression on top of the physical symptoms. I live 600 miles away. MND has no hope or cure and I'm finding it all quite a shock. My two brothers live in different continents, so I'm the closest relative to her. It looks like the 'normal' prognosis is 2 years but she is already bed bound. I am completely freaked out. Any advice over how to support her and my step father would be much appreciated. I have v young 3 DC (one of which is pre school). I have no idea how I'm going to get through this.

InternationalHouseofToast Thu 12-Nov-15 20:08:44

hand holding until someone more experienced comes along. Being so far away and with such small children I don't know how much practical support you can offer tbh. You could maybe use skype so your mum gets to see her DGC from her bed and you chat to her, even if it's just about your day, or pay for a cleaner to free up your step father's time or do a weekly online shop for them, just lift some of the domestic burden.

Expect this to be a shock for you as well sad

emummy Fri 13-Nov-15 21:56:05

You could get in touch with the motor neuron disease association; it's a number of years now since my MIL had this but at the time they were able to offer some support and practical suggestions. I don't know where you are, there is a separate association in Scotland.*Internatinal*'s suggestions sound good too. Sorry you and your family are going through this, it is a horrible disease. Hope you have someone there to support you too.

Sedona123 Fri 13-Nov-15 23:47:12

International's suggestions sound great. My Mum was diagnosed with MND just over three years ago, and is towards the end stages, but still with us. The usual prognosis is 3 to 5 years. I won't say too much on here, but please PM me if you want.

Ohdeargawd Sun 15-Nov-15 20:19:46

Thank you all, I am grateful to you. I spoke to mum today and it sounds as though she has given up the will to live, not eating, not really moving about her voice thick with emotion and slurry. My step father thinks it is mainly psychological, the depression has got a real grip of her and she cannot see how she can have any quality of life with MND. I am going to visit on Thursday (without the kids, she doesn't want to see them, she feels it will be too exhausting and I don't blame her! They exhaust me). sedona not sure I am ready for any graphic details yet but I will be in touch in the weeks and months to come. Now I am just digesting the news that she has a terminal illness. flowers to you and I hope you are coping ok. I will try calling the MNDA tomorrow and see if they will chat to me, even though I am in Scotland.

SmokingGun Sun 15-Nov-15 20:29:57

My DGM had MND but it was the bulbar palsy type so had a very quick and significant affect on her swallowing/breathing and vocal cords. Have you spoken to her GP about having a care plan in place? I found I went into practical mode as a way of dealing with it, but with the benefit of hindsight that wasn't my best plan so make sure you look after yourself too. There's nothing wrong with having a cry about this because it is utterly shit.

If you want to know anything about the things I had to organise then PM me or ask her, same if you just want to offload flowers

SmokingGun Sun 15-Nov-15 20:30:58

I meant ask here not her!

Ohdeargawd Sun 15-Nov-15 20:40:57

Interesting...I had assumed it was the more common ALS type but she really seems to be degenerating rapidly and her voice on the the phone tonight was a bit of a shock. Perhaps she has the same type as your DGM. I would have thought being in practical mode is a lot better than my current total emotional basket case mode. Juggling this and three kids and part time work and my own health issues right now is testing me quite a bit! I would love to be practical!

ottothedog Sun 15-Nov-15 21:01:38

Really sorry to hear this
We found the mnd society to be helpful. The hospice care was the best (was not end of life care but a rest for carers) as they understood how to make my grandad comfy. He was about a year from diagnosis.

SmokingGun Mon 16-Nov-15 13:33:47

It might be worth trying to establish which type she has, as if it is bulbar palsy there are a few different options for when her voice completely goes. Practical mode was only good for as long as there was something to do, when everything was in place it all kind of hit me a once. It sounds like you have a huge amount on your plate, make sure you accept any help that is offered to you. Does she have an MND co-ordination in place yet? They can be really useful

HeartsTrumpDiamonds Mon 16-Nov-15 13:41:56

flowers OP, having a parent who is so very ill, and far away, is really tough. Be kind to yourself and accept any and all help and support.

My cousin in his early 50's has MND and was diagnosed around 2008/09. He has found the MNDA invaluable. He is one of the lucky ones - the disease is moving slowly enough that he still has quite a lot of quality of life. He has trouble dressing himself now (buttons / zips) but luckily his DP is amazing and cares for him very well. He can still mostly feed himself but has to be careful with what he eats (swallowing).

I am assuming he is younger than your DMum but I just wanted to say that even though it is a terrible life-limiting illness sometimes there can be hope for some semblance of quality of life.

emummy Mon 16-Nov-15 21:29:03

OP there is a separate MND Scotland, hope you managed to speak to them. I did some fundraising for them earlier this year, they can be helpful. Best wishes to all your family

Ohdeargawd Tue 17-Nov-15 10:39:33

Yes - I spoke to MND Scotland yesterday and they are arranging for a counsellor to call me this week. They couldn't really help with what to expect as we don't know what type it is. I think knowing what to expect will be useful and help prepare me. I have just read a very good autobiography - It's Not Dark Yet - read it in one sitting. Heartbreaking but helpful iykwim.

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