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Thread: saying hello. Bit lost.

  1. #11
    Forum Member Terry's Avatar
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    Quote Originally Posted by benaldo View Post
    hi Terry - he doesn't, no. Why do you ask?
    We've been talking about cannabis, and had a good chat last night where he revealed he's progressing more things than I'd realised. So, some hope.
    B
    Mnd can affect the brains ability to control emotions and along with this, in a few of this cases it can make people aggressive. I doubt that your dad will have problems like these if it has not happened yet.

    Frustration and being newly diagnosed does take it's toll.

    Good to hear his thinking and talking about things.

    Love Terry

  2. #12
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    Great news everyone is that we've had a good chat with dad, and he's probably more on top of things than we'd thouhgt. It's hard because he's obviously also coping with it all, trying to stay positive. And I don't think he realises how worried those of us around him are about whether the things he needs sorting are getting sorted.

  3. #13
    Forum Member nunhead_man's Avatar
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    Good morning Benaldo

    Welcome to the forum from me this and it looks likes you're managing well

    One comment on the driving stuff is that you need to tell the DVLA about your disease and they will probably issue a three year licence?

    Also I swapped from manual car to an automatic one (actually a PHEV) when I had trouble with the handbrake - the new motor is all pushbutton which I can manage with my existing level of disability

    I will have to stop driving though when I lose my grip as I won't be able to turn the steering wheel
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

    "Things turn out the best for people who make the best of the way things turn out"

  4. #14
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    Quote Originally Posted by Terry View Post
    Mnd can affect the brains ability to control emotions and along with this, in a few of this cases it can make people aggressive. I doubt that your dad will have problems like these if it has not happened yet.

    Frustration and being newly diagnosed does take it's toll.

    Good to hear his thinking and talking about things.

    Love Terry
    Ah yeah, thanks Terry. I think he's been struggling to control aggressive emotions for quite a few years, to be honest. I'm assuming that's not directly connected.

    I really feel for him, and I think his next best step is counselling, in part to give his partner/carer a bit more emotional space and support. She can't really make the space to talk to people about her side of things at the moment - she's very restricted.

    Thank you for your kind and supportive candour Terry and everyone.

    BX

  5. #15
    Forum Member Terry's Avatar
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    Hi Bx,

    Maybe talk to him and his doctor to see if drugs will help. Just because you have them doesn't mean you have to continue to take them..

    I doubt that it is is much too do with Mnd.

    Love Terry

  6. #16
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    Hi Benaldo, my dad was diagnosed early January.
    I struggle still with what to do etc.
    With dad most appointments just fell in to place as the consultant and mnd nurse will refer to things such as the SALT team ( speech and language therapy). Mnd association are always great to connect with. Loros hospice have been amazing with dad too so they are a good contact to have. Try not to get over whelmed to easy though it's hard to not get swept away with it all.
    I really hope you are all ok xxx

  7. #17
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    Quote Originally Posted by Boden1986 View Post
    Hi Benaldo, my dad was diagnosed early January.
    I struggle still with what to do etc.
    With dad most appointments just fell in to place as the consultant and mnd nurse will refer to things such as the SALT team ( speech and language therapy). Mnd association are always great to connect with. Loros hospice have been amazing with dad too so they are a good contact to have. Try not to get over whelmed to easy though it's hard to not get swept away with it all.
    I really hope you are all ok xxx
    you're really kind, thank you. My dad's been told (by specialist) to maybe stay away from local MND association and meetups for now, because he'll see people in a condition that may unsettle him, and that he should wait. I think he's getting to grips with what needs to be done, but not fully. He's done his LPA. I think the coronavirus shut down will focus his mind!

  8. #18
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    Oh yeah of course, sorry I forgot there for a second about the dreaded invisible enemy. It is tough as the child, I understand well how you must be feeling. Please reach out if you want to talk.

  9. #19
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    Quote Originally Posted by Boden1986 View Post
    Oh yeah of course, sorry I forgot there for a second about the dreaded invisible enemy. It is tough as the child, I understand well how you must be feeling. Please reach out if you want to talk.
    thank you so much.
    What do you mean the dreaded invisible enemy? Coronavirus?!

  10. #20
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    Yes coronavirus. X

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