Please help - mum today diagnosed with Motor Neurone Disease (long post)

[Ohdeargawd]

I am having a pretty shocking month. I haven't got the energy to name change after my last emotional hurdle. Today I had a call from my step father than my mother's neurological condition looks most likely to be motor neurone disease. She has had MRIs, brain scans, peripheral nerve conductivity tests, blood tests, dna tests - the lot. It started 3 months ago with weakness in her arm, she laughed about it. It spread to her other arm within about a month and then her legs started feeling weak too. She then stopped being able to lift a cup to drink and had to use a straw, and now, 3 months on from first symptoms, she is bedbound (albeit partly with depression) has lost a stone, and things really are not looking good.
The results from her nerve conductivity test cannot conclude MND outright but very much lead us towards it. Is it possible to diagnose outright?
I'm still in shock- day one of finding out. I guess I'm asking for anyone's experience with this and how on earth to deal with it. I was feeling pretty broken before this, am worried I'm just not going to cope. How do you cope with a diagnosis of a terminal disease with a parent? What do people do to 'take each day as it comes'? How is everyone else so brave? I feel so completely devastated.
I live over 600 miles away so cannot easily drop in but plan to visit as much as I can if she will allow it (so far has wanted us to stay away as she's too emotional). She is not dealing with it well (nor would I), and the last thing I want is to be emotional and set her back even further.
I'm just not ready to accept she is dying.

[Pleasemrstweedie]

Nothing to add, but didn't want to read and run.

[MatildaTheCat]

Sorry no experience but sending great sympathy. Have you been in contact with The MND Association? They will be able to support both your mum and the family.

I hope you can visit and spend time together soon.

Best wishes.

[Witchend]

(((hugs))) a friend recently died from MN disease, so I know a very little of how you feel. It was a great shock when he revealed he had it-I think he had known for sometime beforehand, but chose not to say until it was becoming more obvious.

I'd say to her you want to see her. She may be thinking you won't think she's worth visiting. Sort out when you can visit, and let her know.

Apply (if you haven't before) for DLA-she should get the mobility part too, which if you can help her get out may help depression. Then you can use it for caring and things for her.

Your stepfather may also be needing a break, so if your dm objects to you coming you can say that you're coming to support him too.

I don't think everyone else is so brave. Everyone else puts a brave face on when out is more of the truth. I echo the advice to speak to the MND group, as it helps being with people who have been through/are going through the same as you.

[goddessofsmallthings]

What dreadful news for your dm. It's not surprising that she's taken to her bed in part because of depression as MND is a life-shortening condition, albeit that some may live for 10 years or more from the appearance of the first symptoms and others, such as Stephen Hawking, live even longer with this currently incurable degenerative disease.

I hope that, despite any objections your dm may voice, you will visit her asap as it will no doubt do you both a power of good to weep on each other shoulders' and this may encourage her to express her fears and begin to make the first tentative move towards confronting and addressing them which, in turn, may go some way to alleviate her depression although, of course, anti-ds may be more effective in the longer term.

Do please acquaint yourself with this wonderful organisation //www.mndassociation.org/life-with-mnd/newly-diagnosed/ and make sure that your dm and your dsf are getting all of the benefits and practical help to which they're entitled as it can make a hugh difference to both sufferer and carer when financial worries are eased and periods of respite enable them to have a break from each other.

These articles may be of interest to you and I would suggest you make enquries as to whether there are any clinicial trials taking place which would be suitable for your dm to participate in:
//www.independent.co.uk/news/science/breakthrough-in-spinal-cord-research-could-lead-to-eventual-motor-neurone-disease-cure-9692343.html
//www.dailymail.co.uk/health/article-2689273/Have-scientists-cure-Professor-Stephen-Hawking-Potential-cure-motor-neurone-disease-discovered.html

MND is a godawful disease but don't give up hope - and don't allow your dm to throw in the towel while there's all to play for.

for your dm and a to calm your fraught nerves. Words are inadequate at times such as this and I hope you will accept my apologies if any of mine are unwelcome.

[RonaldMcDonald]

a close family member died from mnd last year.

i cannot express how sorry I am to hear about your mother's diagnosis and for anyone facing mnd diagnosis. I would suggest that you make detailed plans to see as much of her as you can now.
Expect to be emotional and embrace it as there is nothing else for it than that in my experience. She will also be frightened and down.

for some people the disease moves quite quickly and for all except a lucky few it is an illness that is very life shortening. I really would suggest that you are not confused by the anomaly that is Stephen Hawking
coming to terms with that was very hard for us and I hope that you get support.

My understanding is that they diagnosis MND as a last resort and after anything else at all has been ruled out. After many months of wrong diagnosis, in our case, finally a decent neurologist diagnosed mnd which was devastating but at least prevented unnecessary treatments for other hopeless illnesses. There are four different types of MND and that will affect how the illness progresses to an extent and average life expectancies

Please do not underestimate the feeling of fear that comes from the progressive weakness in her legs. The weakness often leaves someone with mnd unable to walk in a surprisingly short time.

the mnda were really excellent. contact them asap. they are endlessly brilliant in terms of support. They can help with having your home modified and understanding the illness and all the unhappiness frustration and anger it causes. They made home visits and were very calm, brilliant really. They also make lots of suggestions about benefits and life insurance etc. They have very supportive forums on their website too.

Wishing you a great deal of positivity for this next period.

[Ohdeargawd]

Thank you for your strong words of advice and wisdom. I am starting to accept it a bit more now, but am still very emotional and desperately sad. I am going to visit on Thursday, she is now really keen to see me and was very emotional on the phone which was really hard to stay strong for. She seems to have given up a bit, not eating, not moving much and sleeping a lot....is this the disease or is this the depression? A MNDA nurse is visiting tomorrow which will hopefully give her some courage and reassurance that a certain quality of life with MND is possible for a while. I think they are also seeing a specialist who might be able to tell them which of the four types of MND she has. My dsf is being a rock, he is back in practical mode and I love him for it.

[RonaldMcDonald]

Anything you want to ask the Mnda they are absolutely brilliant. They have endless patience and caring and are utterly fantastic. No matter how confused angry or low you might feel they are there and brilliant.

Your mum might be having difficulty eating that she isn't talking about. Make sure you address this ASAP.
In terms of feeling down it is an accurate response for you all. I am so sorry.
However you get to have time together now and there are many work a rounds to help deal with the disease as it progresses.
Please ask for all the help you can get to ease the whole process xxxx

[Ohdeargawd]

Hi all, quick update from me. Am here with mum and have been for a few days. She's not great. Her lack of appetite is probably caused by side effects from the pills she's on. She's refusing Riluzole (sp?) as she felt like death after taking 3 and apparently they only extend your life by a few months so she can't see the point if they make her feel so bad. She had a terrifying breathlessness episode last night - it had been a stressful afternoon signing LPA forms with a witness and she suddenly couldn't breathe and felt faint and looked unbelievably awful, basically like she was dying. I have read that breathlessness is party of MND but perhaps in this case can be attributed to stress? Am finding it hard to believe the MND could be moving this fast. Her upper arms have some function but she has to lift a glass with both hands. Her speech is normal (yay!) so not Bulbar Palsay. My uncle is an ENT consultant and is visiting this afternoon and he might know more about what to do. I'm planning to visit again in 2 weeks, but am already dreading seeing how far she's changed in that time (although she may well have stabilised with the antidepressants in that time too). She choses not to leave the house and even 10 m walking to the car is enough to put her back into bed for hours. I read all these stories about people with MND who live a fairly normal life and wonder how long mum must have had it before it became this obvious. It is pretty terrifying right now and I think we need to talk about getting her used to carers and even using a hospice to give my DSF respite from time to time.

[RonaldMcDonald]

Our experience taught us to get every assistance in place ASAP
So a hospital bed winch etc
Organise carers ASAP so that your SF doesn't become exhausted
Get a wheelchair and apply for a blue badge
Sort out all benefits possible as they will help to pay for a cleaner M&S food etc
Talk to someone about her breathing. It might be stress related as finding it hard to breathe is stressful in itself. There are machines that she can be given to reduce the stress placed upon her by having to try to inflate her lungs. They help the process.
She can also use oxygen

Please don't assume that anyone is typical with MnD.
Please understand that she is probably doing more than she comfortably can tbf

I hope you are okay and it would be good to speak to a mnda representative as they have so much information