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Thread: In denial

  1. #11
    Forum Member
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    Hi Wend
    Sorry you have been given this diagnosis but welcome to the forum. I was diagnosed 7 months ago and it just takes time to come to terms with it .
    It is very hard I must admit me and my family just cried for a few weeks after then it slowly gets better and you get on with "normal " life such as it is !
    Try and take every day as it comes and try not to think too far ahead ,easier said than done ,I must admit .
    You will find lots of advice and help on this forum don't be afraid to ask ,or just have a rant .
    love Chris

  2. #12
    Forum Member Barry52's Avatar
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    Hi Wend and welcome to the place nobody wants to be but having found us you will get lots of support and advice.

    As others have said a second opinion may be worth checking out, especially if they have not specified what form of MND you have. Like you I was shocked and numb when I was first diagnosed but a second opinion found I had the slow progression form and whilst it is no picnic I have made the most of 6 years following.

    If your husband has done research into MND he has probably read some horror stories because like the news on the media, bad news is more sensational. I know it’s early days for you but you will learn to deal with it in time and I hope your husband rallies round.

    Best wishes,
    Barry
    Iím going to do this even if it kills me!

  3. #13
    Forum Member AndyB's Avatar
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    Hi Wend and welcome
    It's not a place any of us want to be but as others have said you'll get lots of support in here. You can scream and shout and swear at us, we'll all understand.
    I was diagnosed 2 years ago, arrived home, burst into tears with my wife and then went onto the Internet to find out all I could about MND.
    I've since realised that what you read is the worst case scenario .
    After a few weeks I began to accept the situation I am in, I can't do anything about it so all I can do is learn to live with it.

    Hopefully you'll soon get over the shock of the diagnosis.

    Andy X

  4. #14
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    Welcome Wen

    You will find great support, advice, and knowledge from the folks on this forum.

    Wishing you, and your family all the best in the days ahead.

    CCxox
    .

  5. #15
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    Jan 2018
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    welcome Wend. great support on here to all your questions, vents, anger and sadness.

    I have seen 4 consultants, not my choice and they still can't agree what tyoe of MND I have,. 2 MRI;s and 3 lots of EMG testing in 18 months. . We all seem to have some symptoms the same and some different but we are on the path together. I live on my own but its the little things that keep me going, my dogs, friends etc. The local hospice is great, they are trying to change their image and are running lots of different days and drop in help. I was dubious but found out from 4 Fridays there that it lovely. free complimentary therapies too and not just people with MND which is quite refreshing.

    Pleasae know that you can always post on here at any time and someone will answer as I have found. Chin up xxxxx

  6. #16
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    May 2018
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    Hi Wend
    I am so sorry for your diagnosis. It's such a shock isn't it ? You sound like a strong person with a lovely husband !

    As others have said ,there is so much support on here both emotional and practical from people who have lived with the condition for years.

    I am fairly newly diagnosed ,after many tests and I have had good support from the local MND team. The nurse did advise me and my husband to use the MNDA website and not to spend time looking at awful things on the internet because everyone's progression and journey is different and hard to predict.

    I am thinking of you and sending you best wishes,
    Love Debbie x

  7. #17
    Forum Member Pinkelle's Avatar
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    Hi wend. Totally normal to be feeling as you do. It's very early days and they will be a bit dark at times. You will get through it though and I'm sure your husband will come round as soon as he gets his head around it xx

  8. #18
    Forum Member Wend's Avatar
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    Jun 2018
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    Dear Everyone - thank you so much... I am taking everything on board... John and I are discussing who to tell and when... we have decided to get the adults in the loop before telling our kids - boys of 19 and 16... the hardest part of all this is potentially being responsible for 'ruining' their lives. No doubt I am under estimating them, but I am terrified that the elder will refuse to go back to Uni or something. I had to laugh about the twitching - I agree - I need them for now at least to prove anything is going on - I can subconsciously decide that the walking is just a few pulled muscles or something... .anyway - thank you all so much and I must apologise to all those of you who have far more to struggle with ... I have been a bit self absorbed to say the least! This is a big hug to everyone ) Have a good day! xx

  9. #19
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    Wendy:
    I told my 2 kids as teenagers. I was sure I was 'slowly progressing. I told them, without tears, that (I have this condition, it will worsen over time that will require adjustments, and "I am not going anywhere soon". I said "I am probably not going to get very old but am around for a while". That reassured them greatly. They are both at university thriving.

    Charles

  10. #20
    Forum Member Wend's Avatar
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    Jun 2018
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    Hi Ellie, I am on Pregabalin and Quinine... Riluzole has been brought up ... I have another appointment in a couple of weeks, when he wants to discuss that and Baclofen. I am a bit concerned about throwing drugs down my neck but will take advice based on my symptoms I guess . Thanks for the support, friends say I am copying so well - but if I start crying everyone around me suffers huh?! xx

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