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  1. #1
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    saying hello. Bit lost.

    Hello. I'm new to the forum, and to MND - I don't have it, but my dad does. Diagnosis was about a month or two ago. I'm just hoping he'll be brave and look it in the eye. Only because I think that'll help him feel less afraid, to enjoy life more now, to be able to understand that he needs help (and already), and to not feel ashamed to reach out and ask. Also to own the situation, rather than be defined by it. That's probably just nonsense from me thouhg. How can I understand what he really wants or needs.
    My sister's being great getting lots of information about what needs to be done. And dad's partner is clearing many of her projects and plans aside to be more available.
    Anyway. I mustn't say too much.
    B
    Last edited by benaldo; 20th February 2020 at 16:47.

  2. #2
    Forum Member Ellie's Avatar
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    Hi B and a warm welcome to the Forum.

    So sorry for your dad's diagnosis.

    I guess we all deal differently with the bombshell of the diagnosis of MND - some people dive right in and start ticking off their Bucket List, others continue life as before - there isn't a right way or a wrong way to deal with it. If your dad was a home bird before his diagnosis, it's likely he'll stay so now.

    Of course that's not to say his family can't organise and faciltate outings or a mini-break!!

    Has he had any appts yet with a specialist MND Clinic and community services yet?

    Best wishes.

    Love Ellie.

    PS. And nothing in your post was "nonsense", B...
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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    hi ellie -thank you for the reply. He's had two appointments at the clinic, talking to specialists. I don't think he's had the community services appt yet. He needs counselling, which I'll try and talk to him about soon. But I think the NHS will only give him 6 sessions?
    We have some trips and breaks planned, but my fear is that he's unrealistic about what's happening, what he needs to do, such is his enthusiasm for life to carry on as 'normal'.

  4. #4
    Forum Member Ellie's Avatar
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    B, his local hospice might offer him counselling, as well as providing other services not only for your dad, but for the family too.

    And please don't think of hospices as just places to go for end-of-life care - they are committed to helping people with life-limiting illnesses to get the most out of life.

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

  5. #5
    Forum Member Terry's Avatar
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    Hi B and a warm welcome to the forum,

    It's good to hear that your dad knows technology and it is important for many of us.

    It's always good to get out if possible.

    Please feel free to ask any questions or share things with us.

    Best wishes, Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

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    Thank you Terry and Ellie for your further replies.

    I'm trying to understand what needs to be sorted for/with him, even at what he thinks is an early stage. My sister's getting her head round lots of things. Mine is a bit in the sand. I've found advice on various websites, including MND association. But do you know of a list of 'stuff you should sort soon after your diagnosis' type thing? I'm thinking -

    - counselling (via GP, but this is only 6 sessions, so look at private too) - for dad, his partner, and any of us! But mostly dad, because he's depressed and in some denial and getting quite cross, which is making life v difficult for those most close to him, those he needs the most.
    - care assessment
    - lasting power of attorney
    - connect with local MND association (their next meeting is end of March - I'll try and go with dad if he's up for it)
    - hospital clinic appointments with specialist (next is months away I think)
    - sign up for research trial (just cos this was suggested by dad's specialist and he seems willing
    - voice banking
    - car adjustments (his left hand has very weak grip and he's reaching around with his right to indicate and put the handbrake on...)
    - home upgrades for accessibility
    - speech/swallowing therapist
    - create a continuous healthcare plan

    What do you think? Is there other stuff I/we should get on top of?

    many thanks everyone. Bx

  7. #7
    Forum Member Terry's Avatar
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    Hi B,

    Does he laugh or cry uncontrollable or inappropriately?

    Firstly he has to sort himself out because it will be hard to get him to do anything if not. Many of us take Antidepressants, sometimes for different reasons.

    Your list seems quite comprehensive but don't try to do everything at once.

    Love Terry

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    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

  9. #9
    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

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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

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