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rocky
17th December 2011, 21:07
Hi everyone, how you all doing?

I was not aware of this forum before or I would have joined a long time ago. I am a carer.

My mother was diagnosed with MND in 2009 and it was very hard to deal with. I was at university at the time and very nearly dropped out.

When she was diagnosed her health was not too bad (she had a drop foot at the time and kept falling over) but during the course of the year she gradually got weaker to the point she could no longer walk but could stand up. During 2010 she was admitted to hospital and contracted pneomonia, she was on a life support machine for about 2 weeks and then spent a further 2 weeks in hospital before she came home. (the docters didn't think she would make it)

By the time she got out she was totally bed bound and I had to give up work to become her full time carer. She needs a ventilator at night (and is using it a lot more during the day now). We have had a lot of highs and lows and I can honestly say the past few years have been the hardest of my life.

I have seen her condition progress every step of the way and tried to do what I can for her, its just been brutal. She was prescribed the Riluzole tablets about 5 months ago I came across this forum today and have been reading a few posts, you are all amazing people. I will no doubt be reading a lot more posts over the coming days and maybe get a few tips that will help me.

Thanks to everyone here

Lassie
17th December 2011, 22:47
Hi Rocky,
Welcome to the forum,
I'm sorry to hear of your mother's condition. I'm a carer for my husband. Ask what you like and I'm sure someone will know the answer !
Lassie.

MikeFD
18th December 2011, 11:26
Hi Rocky and welcome to the forum.

Sorry for the circumstances that have bought you here, but I'm glad to see you're already finding your way around. There's plenty of information to be found here, and if you have a subject that you can't locate help or information about, try using the 'search' facility at the top of the page.

Otherwise feel free to ask the forum anything you need advice on, and, as I always tell new members, you can always speak to MND Connect (for details, click the 'MND Connect' tab at the top of the page) when you need confidential advice or about anything care related. They are happy to speak to carers, even simply on the basis of a friendly chat to sound out your problems.

Any further information you need regarding the forum, please contact one of the moderators who will be only too happy to help.

Best wishes,

Mike.

slim
18th December 2011, 12:40
Hi Rocky
Sorry to hear about your Mothers Condition, Hope you find the forum useful. With your experience you may even be able to advise others.
Kind regards
Simon

SGD
18th December 2011, 13:00
Hello Rocky and welcome to the forum

Steve

Bels
18th December 2011, 16:10
Hi Rocky,

Sorry to hear about your Mum. My Mum also has MND so I can appreciate what you are going through although my Dad is her full time carer. A good find this forum with a lot of decent people on it and lots of help.

Bels

pete
18th December 2011, 16:58
Hi There rocky,

Well from reading your post ,you and your mom seem to be well into the reality of what MND is all about ,I along with all on here wish you well and hope your moms condition,remains stable ,Has she noticed any improvement taking the riluzole, She seems to be one determined lady after all she has gone through, So if it is advice ,there are many on here who know quite a lot about the condition and if its a chat about anything else feel free, its tough going it on your own .

Best wishes
Pete

elle
18th December 2011, 22:23
Hi rocky,
welcome to the forum, i can only repeat what has already been said keep in touch.
Take care x elle x

rocky
19th December 2011, 10:39
Thank you to everyone here for your kind words, its unfortunate we meet like this. I hope you are coping with your own battles well and wish you all the very best.

The Riluzole doesn't actually make her better, from what I understand it is prescribed to give her slightly longer.

Its so true, I can advise others (dont know how much help I can be). I think we all already know, you have good weeks and bad weeks, just make the best of the good ones.

Thanks again

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