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.

I’m so incredibly sorry to hear this. I hate MND.
Do you have the equivalent of the MND association (uk charity) in Australia?
Lots of information out there (don’t forget it’s called ALS in the US) but perhaps stay away from searching out too much whilst you get your head around it.
Wrt your daughter and how much you say, it might be worthwhile getting a charity on board for that too, there are lots here that can help when you receive such a life limiting diagnosis and probably are there. They can help explain things to family and children at their level.

Do you have a relationship with your family? Now is the time to move to where you and your daughter can get support if you don’t have it where you are.
I have a fair amount of experience with MND if you want to ask anything (3 friends, 1 that was very close).

I'm so sorry to read this.

I would suggest you get referred to a hospice asap. Assuming they work as ours do in UK, at mine we run support and therapy groups for people coming to terms with a new diagnosis including MND, offer counselling for the shock and sessions with doctors, physio etc to start to work on getting everything in place before you are too unwell to do so and miss out on our support. We also support families with cooking to terms with these diagnoses.

I wish we had found a cure to make it all go away.

I'm so sorry to hear that. You must be in shock. A dear friend of mine runs MND and Me in Brisbane. Do contact them, or the Motor Neurone Disease Association of Australia. They'll help with support and information. Best wishes to you.

I am so sorry op. A cousin died of MS in December, I also knew someone many years ago who had it and a friend of mine's mother in law also did. It is a horrible disease - I worked in a Neurology hospital for a few years and met several plus other, more obscure neurological diseases.

Enjoy your life as much as you can while you can, nobody can predict how long your life will be and it does vary.

Of course you are worried about your daughter; please keep in contact with your ex husband and any other responsible relatives. Love your daughter as much as you can but prepare her.

People with MND have periods of euphoria (that is a fact), make the most of those. Have the best treatment you can afford. Remember, Stephen Hawking defied all odds, he was a miracle.

Nurture yourself.

Bless you.

Thanks everyone for your replies and suggestions, There is the MND association here (I'm in Sydney) and I have a meeting with one of their nurses tomorrow so will find out more then I guess.

I do have lovely friends here and am on good terms with ex but have no other family here. It's really hard for my parents who feel too old for the journey here, and my brothers who have young families. I will go back to visit the U.K. but feel my life is here now, and my daughters life is here. I will try to prepare her the best I can. Am just dreading telling her

You'll tell her when the time is right, it doesn't have to be right now.

I had a meeting with the lovely mnd nurse and she was very supportive and reassuring in terms of the level of support I will be given to be able to keep independent and living at home as long as possible.

@11hairylegs - you said you had experience of friends having had MND - can I ask how long they survived once they were diagnosed and how they coped living at home? Did they have children? Did they all
Have partners to care for them? Did they manage to work after diagnosis?

There is a local support group which I can go to, but I know I'll find it very confronting because there will be people at all stages of the disease and it is scary to see how I will end up.

Hi mashedswede,
2 years (Bit was diagnosed a little later), 2.5 years and 3.5 years. 2 out of 3 remained at home until they died with the occasional stay at a hospice. The other died in a hospice.
They all had children, 2 had adult children and 1 had teens.
They all had partners but they also all had support / care visiting them every day towards the end (& to administer meds etc).
1 was already retired and the other 2 gave up work immediately and started a medical retirement.
Have you ever met anyone with later stage MND? I’m not sure I’d want you to see that just yet, unless you think you’re ready? It’s very early days.
I’m still really sorry to hear your diagnosis, I’m here if you want to talk more.

I’m sorry to hear this. I just wanted to add a positive story. A friend of mine was diagnosed with MND 8 years ago. He walks with splints but with those you wouldn’t know there was anything wrong. I have MS and I did a lot of reading about the similarities between the two and there is a lot of evidence that diet and exercise plays a bit part in prolonging disability as long as possible. I hope it’s as positive an outcome as possible for you

Hi @11hairylegs and @icedancerlenny, thank you for sharing your experiences. It's good to hear that your friends could stay at home until the end 11 and also a good news story about your friends survival time icedancer.

I guess I'm looking answers that aren't available- e. g how long will I survive and how will I cope at home etc. I was a registered nurse most of my adult life but worked mostly in occupational health. When I first qualified as a nurse I remember looking after a patient in the advanced stage of mnd and I remember how sad it was and thinking I hope that never happens to me...... but I guess we don't get to choose how we die and that's that.

I am thinking of voluntary euthanasia, but not sure if that would traumatise my daughter more than watching me die slowly. It's a long way from Australia to Switzerland as well.

Was it awful seeing your friends in the last stages 11? Do you think they had any quality of life? And how traumatic was it for their families? I imagine it would be the worst

Hi @mashedswede,
You’re right that it really is sad, most illnesses diseases have that chance of a cure. That said, I know my close friend was on medication to help with some of the symptoms as much as it couldn’t halt progression. I do hope they find a cure soon.. I really do.
With my close friend, it was such a slow progression (or it at least felt that way) that it really wasn’t awful until or when they became upset. Tbh they absolutely amazed me and embraced their life completely, savouring every last moment. Starting with holidays when they could, go trips out, to going to new places, to a drive out somewhere beautiful, to watching a sunset, to seeing friends and family, to having company and a handhold. Everything. I’m still in awe of them despite the fact they’re no longer on this earth. I honestly think that because of how positive they were, it couldn’t help run off on you. The hardest bit was when they lost most of their speech and couldn’t communicate very well, this was later on though.
Every situation is very different and no one would judge you for at least considering euthanasia. I’m not going to even try to influence your decision but I know it wasn’t for 2/3 of my friends. I know 1 very much considered it but didn’t in the end.
Are there some books that might help explain mnd or other life limiting conditions to your daughter?

Thanks @Rebellenny, I looked her up, what an inspiration she is. Amazingly positive and so young. Now I feel lucky as I have had much more time on this earth than she will. My speech and swallowing is fine so far. I think that's the bit I'm dreading most.

Thanks also @11hairylegs - I hope my progress is slow like one of your friends. It has been so far.

In real life I'm much more positive, I am grateful for my life, I've been pretty lucky in general and have lived a full life with lots of fun and adventures. I think I'm just using this forum to share my deepest fears as I find it makes people around me feel uncomfortable so i don't like to do it to them. The online support here is fantastic- I really value everyone's suggestions and support

I wasn’t suggesting for a minute that you weren’t positive, I hope you didn’t read it that way. Goodness, anyone would be sad in your situation right now. It’s a huge shock and it’s bound to take a while to get your head around it.
I’m glad you’re finding this thread helpful, please do ask away and I’ll help if I can.

My dad had 5 years post-diagnosis. He lived alone in supported accommodation with carers going in. I was early 20s when he was diagnosed.

His swallowing and speech weren't significantly affected, even at the end. It wasn't as traumatic as we'd feared.

Get support where you can - family, friends, support groups, charity. I think you only be honest with your daughter if/when she asks questions.

Thinking of you both.

Thank you all for your helpful support - and lovely to hear things weren't as traumatic for your dad as you thought @NeonK. I do feel more positive hearing those stories.

11 - i didn't think you were suggesting I wasn't positive, I think I'm just trying to be positive with the people around me to help them in a way. It is so hard telling people as it is upsetting for them,

I'm quite a private person but I recognise I need to tell people around me so they can help in a practical sense. Maybe I need to start being more honest about my emotional needs so they can support me with those as well.......this is a steep learning curve!

A family friend was diagnosed with MND when I was 15, I’m now 32 and his health is starting to deteriorate more rapidly especially his speech but 17 years post diagnosis is more than he ever dared to hope for! Whilst his quality of life hasn’t been amazing in recent years, he has been here and that is what has mattered. He has seen both his children get married, met his four grandchildren, been on some amazing trips etc.

I know the whole family had counselling to come to terms with the diagnosis, perhaps you and your daughter could both benefit from this too?

Thanks @MakeLemonade, it is great to hear these positive stories. I'm also questioning what I might think makes a good quality of life in the future. I guess my perspective might change as time goes by. If I could make it until my daughter is independent that would make me happy.

DD started counselling this week, she doesn't know my full diagnosis yet but she knows I will end up in a wheelchair so we said a counsellor would help by being another person to talk to if she feels worried or sad. Hopefully that will help her when I do feel I have to share more about my diagnosis.

We're going back to England for a holiday and to see out family in April and I'm considering telling her more before then. I don't want her to over hear things and learn that way, or to just pick up on a vibe that we're withholding information. She's very sensitive and perceptive to my emotions so it's hard to hide things from her.

Thank you @Rebellenny

My close friend died in 2017 nearly nine years after being diagnosed with MND. She managed to see both of her children into young adulthood. It wasn't easy for her, she was a musician and found it hard when she was unable to work or play her instrument. Instead she got creative writing poetry. In the last couple of years when she could no longer speak she was loaned a TOBY (not sure what it stands for) which uses eye gaze on an on screen keyboard, which meant she could then activate it 'speak' the words she had written down, in the same way Stephen Hawkings did. She had 2 carers plus her partner. I don't want to write too much here because every ones experience is different. But if you want to ask me anything please do. One thing I would say is try to anticipate changes you may need in your environment as your condition changes. My friend refused to contemplate mobility aids etc until she needed them sometimes they would have be brought in and first used at crisis point , for example the wheel chair , my friend was in a state of denial (who can blame her) when one day she could no longer weight bear she had to wait 4 weeks before a wheelchair became available putting a lot of strain on herself and her carers. Anticipate and pre-empt the changes you have to make, you are more in control that way and this horrid disease can't continually pull the rug from under you. Take care.

Hi @sage46 ,

Thank you for your message and advice. I actually have a community OT coming over today to start the process of anticipating my needs. It is really confronting to have to talk about raised toilet seats and hoists to get me out of bed as I'm still leading a relatively normal life - but I guess I have to get my head around it and be prepared. If I can see my daughter grow up it will all be worth it.

What kind of quality of life do you think your friend had over the last years? Did she enjoy her life even with the limitations? Or was she just tolerating it because she had to? I'm so anxious about just feeling trapped in a body that doesn't move and not being able to communicate effectively. I'm so scared of being a burden to everyone

I do have an appointment to see a psychologist today so I will talk about my fears with her

Hi OP... my Dad had MND. He was diagnosed later than the usual demographic and was 69 when he died. He had about four years from diagnosis. The first three he was relatively mobile and independent. He was in Brisbane, and I suggest you compare services available to you, and costs associated. If it is possible to return to UK, that might be the better option, unless you have extensive private health insurance. (Even then, I doubt they cover much.) Would your daughter’s dad be open to returning to UK & raising her with the support of extended family when time comes? As for voluntary euthanasia, at the moment, only Victoria has that as a legal option. I would suggest you make sure you get a Medical Power of Attorney (and a Legal Power is Attorney) organised as soon as possible to state your wishes. You may find that you end up changing your mind towards the end, as pain, etc are very well-managed, but the options will still be open to you. It’s early days, and I am very pleased you are seeing a psychologist. This disease is an absolute bastard. You haven’t done anything to deserve this. The utter randomness of it is it’s greatest mystery to scientists at the moment. I imagine your emotions are going in every direction, which is entirely natural. I recommend downloading some mindfulness apps or YouTube shit to keep you from spiraling until you see the psychologist. Big hugs. X