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Thread: Hello

  1. #1
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    Hello

    Hi all,

    My name is Rachel. Nice to meet you. I'm hoping to meet some nice people here who will be able to offer me support and encouragement. My mother has just been diagnosed with MND and I'm heartbroken. I don't know how to cope. Anyone tell me how they coped and adjusted? Anyone who could help, I would really highly value your advice and support. Thank you.

    God bless,

    Rachel

  2. #2
    Forum Member Terry's Avatar
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    Hi Rachel;

    Sorry to hear about your Mum, it is extremely hard to get your head around the diagnoses and it will take time. There is a lot of advise and help on this forum and you can contact Mnda connect as well with anything.

    You are very welcome here, Terry

  3. #3
    Forum Member Davec's Avatar
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    Welcome Rachel

    Terry says it all! This forum has so much expertise and it will help a lot

    Dave

  4. #4
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    Hello Rachel. I am 67 and was diagnosed in March 2014 and I am extremely close to my daughter. She is heartbroken too It is a desperately sad diagnosis and so hard for everyone to get your arms around it. I find the only way to deal with it is to include her on every appointment I have, wherever possible. It is tricky because she is 180 miles away in County Durham and my speech has deteriorated to such an extent that I cant speak to her on the phone any more. But I text and email and message her on Facebook
    I made sure she came when I got diagnosed. Before every medical appointment, I write a report for the professionals to update them as to my current situation, then I email it to her so she knows where we are. If you live closer to your Mum that is just so much better. I find that if you try to keep practicalities to the fore, get on with day to day living, gather a band of professionals around you whom you can trust, and keep posting on this forum, things might be a bit easier. It is so easy for Mum and for you to make MND the centre of your life but I have found that you have to try and look outside it and seek the positives. It is such a tough place to be and I do feel for you. My consultant neurologist said to us all on the day of diagnosis that she found that people took on average about six weeks to come to terms with it and I do believe that is true. Certainly true for us. Whatever, keep in touch with us all here on the forum. With best wishes.

  5. #5
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    Welcome to the forum, you will find a lot of help and support here. Look at the MND Association publications list, there is a host of useful leaflets and booklets available. My advice is always to stay positive and live each day to the full. Good luck!

  6. #6
    Forum Member Cookewitch's Avatar
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    Welcome to the forum, not a place any of us want to be but here we are and a great bunch we are too.

    I was devastated when my Dad was diagnosed. I know you wonder how you will cope but cope you will.....we just do, we adjust and we manage....it may be hard and upsetting but we do cope and so will you.

    This is a great place for advice and support....you're stronger than you know!

  7. #7
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    Hi Rachel,

    Welcome to the forum, I am very sorry to hear about your mum's diagnosis. This forum is excellent in offering real support from members who have or who are going through the same situation as yourself.
    I truly hope any questions you may have can be answered on here, and also as others may have mentioned the MNDA connect for professional advice.

  8. #8
    Forum Member gerald's Avatar
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    Hi Rachel I know you wish you were not having to be hear but you are in good hands everyone here are amazing I have recently discovered the advice you will get will sustain you through the difficult times ahead. Lots of wise heads to lean on .also whilst you care for mum don't forget about Rachel you also need support practically please seek it out. We are all there for you and mum.
    Take care Gerald xx

  9. #9
    Forum Member AP1978's Avatar
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    Hi Rachel. I'm so sorry to hear of your mum's diagnosis. My mum also had MND, we were extremely close and I wondered every single day how I was going to deal with it all. You will cope because you have no choice, like other people have said, make sure you get support for yourself also as this is where I went wrong, I thought I was the tough one, trying to deal with everything and keeping my feelings to myself, it's really hit me hard and I wish I'd got more emotional support for myself. Make lots of lovely memories and try to stay positive. Annette xxx

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