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Thread: Need advice.

  1. #21
    Forum Member Tim-griffiths's Avatar
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    Hi Denise
    My wife's name is Mary and I have passed on your Hello.
    When Mary was diagnosed we were told to just do everything we could in the time my wife has left, it's only been a week now since diagnosed and to be honest my head's still everywhere, I have constantly been on the phone to family , talking theraphy, MNDA and cab plus have also had doctors appointments, so been rather busy.
    Talking therapy sent me some literature about the condition and reading through this.
    MNDA are very helpful and informative not only on the condition but in every way possible, giving me reassurances and pointing me in the right direction.
    Mary seems so assured and has vowed to fight this with all her strength.



    Thank you for your support
    Tim

  2. #22
    Forum Member Barry52's Avatar
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    Hi Tim,

    I can understand what you are going through as initially MND seems to take over your life and it is often down to the carer to sort everything out. Eventually things will settle down when all the systems are in place and it appears that you and Mary are receiving help from the support services. Be careful that you don’t burn yourself out as your wife need you fully fit and take all the help on offer. We are sometimes too proud to accept help.

    It sounds from what you have said before that Mary is a fighter and that will help her together with a positive attitude.

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

  3. #23
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    Hi Tim,
    I'm so pleased that Mary is being positive. I think that will help you, family and friends.
    As you've realised, the first few weeks are a whirlwind of phone calls, form filling, doctors and hospital appointments!
    The MNDA truly are a wonderful support and there is always someone on this forum to offer support.
    Take care,
    Bernadette x

  4. #24
    Forum Member Tim-griffiths's Avatar
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    Hi Barry
    Yep, everything this past week, since diagnosis, it's been all phone calls, emails and a whirlwind of emotions, in truth although all seems to have been around the diagnosis without me actually taking in anything .
    Mary certainly won't just buckle, and the support and advice along with good wishes we are recieving is unbelievable
    Thank you so much
    Tim

  5. #25
    Forum Member Tim-griffiths's Avatar
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    Hi Bernadette,
    I must say Mary is a very positive person, unlike myself, but her positivity is certainly make me feel a whole better.
    It certainly helps with people on here giving constructive advice and pointing us in the correct direction, it's unbelievably heart warming as those same people are either going through this themselves or have gone through it .
    I must confess that at the moment, because I'm unable to take it away from her I feel inadequate as an husband, natural I guess but no less hurting.
    I'm just so proud of her.
    Thanks for the support
    Tim

  6. #26
    Forum Member Streetwise's Avatar
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    hello tim i felt inadequate as a daughter i remember one night she screamed for a short period of time and after she stopped she communicated why didnt i leave her or the room,inadequate doesnt describe how i felt i thought shes screaming ive got to stay i cant leave her my mam!!!! is screaming she was so psychologically strong she was a solicitor she experienced pain other people will never know and it tormented her .
    i remember when she was choking to death and i moved her head so she wasnt choking she said how did you do that (i suppose thats the autism taking over reminding me of first aid training )

  7. #27
    Forum Member Ellie's Avatar
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    Hi Tim,

    I just want to welcome both you and Mary to the forum.

    Everything has been said really! I agree not to heed the doctor's '2 years' prognosis, as not even the most experienced MND Specialist can know now how long Mary has to live.

    Take time to get your head around things. Your local hospice will be a useful resource for you both too.

    Take care,
    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  8. #28
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    Hi Tim, My partner has just been diagnosed too and I can relate to everything you say. I find it really comforting reading the forum and feel much less alone since coming on here. Try not to feel inadequate as I'm sure you're doing really well in an incredibly difficult situation.

  9. #29
    Forum Member Tim-griffiths's Avatar
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    Hi potto
    I'm so sorry you too are having to experience this diagnose, as I am everybody else on this site, I read the forums not only for comfort ( if I can call it comfort ) but also because everybody here is so helpful in various ways, from comforting support to who to phone ,/ see/ talk to ect.
    The helpline on here is so understanding, I spoke to a lovely lady who has helped me no end in the past week since Mary was diagnosed with mnd, to her I'm so grateful as I am to the people on the forum.
    I have looked down other parts of the forum but being new to this diagnose and unsure ( in my head ) of myself I have refrained from trying to give advice.

  10. #30
    Forum Member Tim-griffiths's Avatar
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    Thank you Ellie,
    It's is so difficult to understand, all sorts of things go through my head and sometimes those thoughts make me feel like a horrible person, delivery in Berkshire and my only daughter lives with her family in cornwall, a bit of a drive, hopefully we can more down there to be nearer to her and her family, would be a great help and we would then also have family support. Mnd helpline have also helped me in this situation, although that in itself would add fear in the respect that the family are the only people we know Inthe area .
    Thank you for the support
    Tim

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