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Thread: Newbie - seeking support

  1. #1
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    Newbie - seeking support

    Hello Everyone. My Name is Rachel And My Grandma is Going through the test for MND currently her doctors have pre-warned us that is is pretty much Guarenteed to be. this is after almost 12 months estensive tests and treatments for a number different wrong diagnosis. My grandad has taken on the role of full time carer but he is 85 and although physically he is and always has been able boddied and healthy he is visably tired and noticably drained. my mum is understandably in tatters. She is now taking the role of "Head of the familly" and trying to be the backbone for everyone else but everythime I speak to her she is crying down the phone to me.

    I am finding it hard to write this as we literally will get my Grandmas results today. I need advice...

    I want to be there for everyone as I am the closest and most able person after my mum.

    if any one can advise me on how I can help my mum grandad/ Grandma and just be there for them in general Any advice is welcome as this is a very new thing to us and we are all a bit un sure of what to do. I suffer from a lot of health problems myself and my Grandma feels like she can relate to me since I have had things to deal with/ adapt too from a very young age so i want to be there for her and help.

    I feel this post is very messy and probably hard to follow so apologies
    Last edited by aminiadventure; 4th March 2013 at 13:56.

  2. #2
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    Hi Rachel,

    I am very sorry to hear about your situation. Don't apologise for your post, I'm glad you have joined the forum and been able to tell your story.

    There is loads of great help available here; from the community itself and from past threads and posts too.

    For the moment I would advise that you, your Mum or maybe even your Grandad get in contact with MND Connect, our helpline for practical and emotional support. Connect is available 9am to 5pm and 7pm to 10.30pm Mondays to Fridays. Calls are charged at local rate.

    The number is 08457 626262 or you can e-mail on email mndconnect@mndassociation.org.

    I hope this helps,

    Best wishes,

    Andrew

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    thanks Andrew I just havent got a clue where to start

  4. #4
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    Quote Originally Posted by aminiadventure View Post
    thanks Andrew I just havent got a clue where to start
    Hi Rachel,

    I understand that you want to be as helpful as possible, but it is best not to take on board too much information all at once.

    You can take a good look around the forum in time, and maybe even visit the Association website, which has a list of useful publications about being affected by MND: http://www.mndassociation.org/life-w...ons-pabmnd.htm

    Everyone here will be very welcoming, so you've found a good place to start

    Best wishes,

    Andrew

  5. #5
    Forum Member roy's Avatar
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    Hi Rachel,

    Sounds like your family are supportive and have been with your challenges,you sound like a grounded, caring daughter and grand daughter.
    What can you do, simple be you be there as they have for you.For me I don't appreciate pity or dwell for the future but still enjoy company
    and any form of distraction.You have strong fears and sad emotions and is always a shock for all families as the condition effects everyone.
    You and any of the family are welcome here for advice,rant and sometimes a laugh.

    Best wishes.

    Roy.

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    Hi Rachel, so sorry that you're here, but as you have been advised this is a great site and you will get instant replies to any problems or advice...and as Andrew said MND Connect are wonderful..you phone them up....they are so patient and they wait for you to compose yourself and then they answer your questions and make you feel that you can help the person with MND. I always write down what I want to ask because I get teary when they answer the phone and I have to say why I'm phoning.
    And the comedy tag team on this forum will make you laugh out loud and that's always good
    hope that helps
    XXXBBXX

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    Forum Member Rory's Avatar
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    Hi Rachel
    Welcome to the crazy gang. We won't offer a cure but we can make life easier for all by some quality advice from people with experience and the will to share the burden of this cruel illness.
    As time goes on the planing ahead with the help of this forum , O/T, therapists, clinical nurses etc will spread the work load.

    Be yourself, be strong and positive and you , your mum and grandad give time to yourselves.


    Best wishes


    Rory
    New Year's resolution -not to get MND again !

  8. #8
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    Thanks Everyone for your Advice, we got the Results last night and it is confirmed. Just being with her and seeing how well she is handling it all has made me stronger. She had to break the news to my Uncle in America on the phone and she did it perfectly. when she did get upset my Grandad Calmed her down instantly. thanks for all your kind words and support. I am sure we will be spoeaking a lot in the future
    xxx

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    Hi rachel,
    I had the same with my mum, took them a year to say that it was Motor Neuron, although throughmy own research I was 99% what it was. All I can say is that all you can do is be there. I wish I had known about this site back then. I lost my mum two years ago, she passed on Easter Sunday. I spent every day with her, you just go into an auto pilot and its amazing how strong my mum kept. Remember u need support too and this site is great for sharing with people, so many lovely people on here. xx

  10. #10
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    Love the new years resolution

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