Does anyone have experience of MND?

[mashedswede]

Help! I'm 52 and have just been diagnosed with motor neurone disease - it is such a shock. I am healthy, I was fit, I exercise, there is no family history. It's a bolt from the blue and it is so hard to take in. Intellectually I know it's just random - but it's just to hard to take in

We emigrated to Australia 6 years ago, I have a 13 year old daughter, am separated from my husband who has Aspergers and am freaking out that she will grow up without me to be there and support her.

The reality is that I don't know what my lifespan will be but average from diagnosis is 2-3 years. Only my legs are affected at the moment but eventually my whole body will be paralysed - how the hell can this happen to me? I will become more and more disabled and I don't want her to become my career when she should be out enjoying herself with friends.

I'm wondering how others have coped with these types of life events....I have told her that I will be disabled and end up in a wheelchair but haven't yet told her about my reduced life expectancy. I don't even know how to start that conversation with her.

My dad died of MND - from diagnosis to his death was around 2 years or so but we think he had symptoms way before he was diagnosed. All in, I suspect he had it for five years. Initially he was horrified & I think looked into voluntary euthanasia & suicide, but as the disease progressed he really started to appreciate his life. He found his faith helped a lot, reached out to old friends, listened to music, loved the internet, enjoyed his food, watching his children & grandchildren grow and the seasons changing. His death was peaceful, dignified & he really didn't suffer. He died at home with all of us around him. It was very, very tough on my mum though, who lost her strong & capable husband incrementally each day. The one thing I take comfort from is that he was utterly himself right up to the last 48 hours (when he was unconscious & easing to his end). He was still my funny, kind, clever dad, just a bit slurry in his speech & confined to his bed. Unlike other diseases like dementia, we weren't robbed of him before his actual death. His body was wrecked but the man was intact. I hope this hasn't been painful or too difficult to read, my heart goes out to you & your daughter. It is without a doubt a cruel disease & you must be very shocked. None of us know when our time is up - life is very fragile. Get as much help as you can from wherever you can - counselling may help you process this big change, as well as lining up lots of practical help. Much love x

A friend's husband was diagnosed with mnd 7 years ago. He is wheelchair bound now and doesn't have much speech, but he still attends school events with his children. Early in his diagnosis he used an app called Record Me Now to make sure his voice was recorded answering any future questions his children may have.

OP please don't compare yourself to others though as everyone is different.

The MND Association has good advice and hopefully the psychological support can help you begin the process of getting your head around this news.

My friend didn't tell anyone but her partner for the first year after her diagnosis. I would say she seemed happier in her last 2 years even though she could no longer do anything for her self and her speech was gone. I don't know if it was acceptance, because she went through real anger in the first few years. She never lost her sense of humour or spirit of adventure. I think once her Children had passed their exams and went to university she felt less guilt. (misplaced guilt) that she has somehow let them down. She saw them both graduate. The week before she died she was having a great time at a stage version of 'The Rocky Horror Picture Show'. I really miss her.

Thanks everyone for sharing your stories , it has been really helpful to me as it sounds like some people have had positive experiences despite the diagnosis. I know everyone will have a very different experience but it does give me some hope xx

One thing I will add is if there’s anything you and your daughter really want to do, do it ASAP as the decline can be very very rapid and you may not feel up to doing it at a later date. The person in my life was diagnosed and had a trip planned 5months later with his children, unfortunately by that point he was both in a wheelchair and relying on carers and also having too many muscle spasms/pains to be able to travel in a car for long periods, trip had to be cancelled which was very upsetting for his children.

Also agree with previous poster about preemptive measures eg equipment, feeding tube etc, much easier to do before they become absolutely necessary than when suddenly they’re needed and having to wait for things to be put in place.

I have no wise words but wanted to let you know I'm thinking about you and your DD I hope you have some support in real life?

Thanks @Thisisverytricky,,
I do have a fantastic mnd association nurse who is guiding me with the planning services and equipment, a great specialist who also runs a multidisciplinary clinic, a wonderful GP and some lovely friends here I Oz.
My family are as supportive as they can be from the other side of the world and my ex husband has started being more supportive in practical terms. We're going to tell our daughter more tonight - I think she kind of knows - she is very perceptive and she has fortnightly appts booked with a psychologist for her support. All in all I consider myself very lucky.

We were going back to the U.K. for a holiday in July but have brought it forward to April. I'm still still working and my manager and colleagues are very supportive. Not sure how long I will be able to work but will have to take it as it comes I guess.

I am really making sure I enjoy life as much as possible every day, and it is heart warming to encounter so much kindness and help from people. Even strangers in the street who see me stumbling and struggling with shopping

I would ask the lady from the MND association about voice banking. It’s horrible hearing my mum speak in an electronic voice. I don’t remember her own voice anymore.

My mum was diagnosed with Bulbar Palsy 18 months ago. She already slurred her voice and we think she had it as much as 18 months before diagnosis. Within 6 months she had a feeding tube fitted and could only manage liquid orally, eating nice food is one thing she really misses. She hasn’t been able to speak for around 9 months. She has recently started to struggle with her weight bearing and can no longer walk.

She is generally well in herself, she gets out to the local hospice twice a week for 3 hours doing various classes. She enjoys herself there.

Home life is pretty bad, my dad cannot cope with her decline (I can’t either, just better at hiding it) and has gone into his shell, barely does anything, he has a good week where I get him out 3-4 days a week to various groups and classes but he drinks and he’s a morbid drunk.

I try to do as much as I can, I gave up work when she was diagnosed and it has been me sorting everything out, hospital bed, rising recliner, trying various medications, getting the help both physical, mental and practical help.

She loves seeing and spending time with my 3 year old niece but my niece some times struggles with mum not being able to speak or play with her. We’ve bought some jigsaws that they seem to enjoy together and mum makes her laugh by putting pieces in the wrong space or upside down which mum loves! Both mum and niece have been plagued with various coughs, colds and, mum in particular, chest infections since Christmas and so we’ve kept them apart, mum is very sad.

She now has 24/7 live in carer (which comes with a lot of problems in itself!! Carers are totally lovely but the agencies have been a nightmare, they just don’t care, mum is just a client, not a person to them.) and I am hoping to go back to work shortly but I know it’s going to be hard to leave her, I live 70 miles away but have been living with my brother who lives locally. As much as he wants his house back, he knows that there will be a lot more for him to do.

So, to sum up - MND is a total bastard and I am so sorry that you (anyone) has been diagnosed with it, especially at such a young age and with a young daughter. My mum is 75 and I am 51. MNDA have been a godsend, could not have got this far without them and our area visitor. She has told us everything we need to do and apply for. MNDA has provided an iPad and speech app (app costs £160😱) a rising recliner, electric wheelchair (I asked our AV if they did grants to fix the all the skirting boards, door frames and walls as mum seems to be a terrible wheelchair driver!!!]

Mums care is covered by the government and they also covered a ramp and wet room for the house. There is a lot of help out there but you have to actively seek it, they won’t give it up easily. Which is where MNDA and the local neurology team come to fruition.

Thanks @Callaird , I hadn't even thought of voice banking but I would like to do that for my daughter. Thank you also for sharing your experience- sorry to hear it is so hard for you and your mum

My mother had MND. She had very good quality of life, with my father and I caring for her. Only her last few days in hospital (pneumonia) were hard, and even then she wasn’t in pain and could breathe.

Beware delaying telling your daughter - it only needs her or a friend to google MND and she’d find out in a worse way.

And do get as much help, as early as possible, eg MNDA/hospice.

If your daughter would end up needing to live with a relative in the U.K., perhaps it’d better for her if you moved together, soon?

I’m so sorry for your diagnosis. Please make lots of recordings for your daughter, of your memories and of your hopes for her. It’s a way you’ll be able to comfort her, and bring smiles to her face, for many decades to come

What a huge shock for you. Lucy Lintott has been living (and achieved such a lot) with MND for over 10 years. https://twitter.com/lucylintott?lang=en She's on facebook and Instagram too. She's amazing, having given birth twice. I hope that might help you.

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