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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; 20 February 2020, 17:47.

    #2
    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 Spinal (hand) Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

    Comment


      #3
      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'.

      Comment


        #4
        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 Spinal (hand) Onset.
        Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

        Comment


          #5
          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.

          Comment


            #6
            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

            Comment


              #7
              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
              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.

              Comment


                #8
                Hi B, welcome to forums. I’m sorry about your dad’s diagnosis. As Ellie said hospices are good. One thing that I always mention to newbies is voice banking. If you put that into the search box posts will come up about this. Lynne
                ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                I'm staying positive and taking each day as it comes.

                Comment


                  #9
                  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

                  Comment


                    #10
                    Originally posted by Lynne K View Post
                    Hi B, welcome to forums. I’m sorry about your dad’s diagnosis. As Ellie said hospices are good. One thing that I always mention to newbies is voice banking. If you put that into the search box posts will come up about this. Lynne
                    Thank you Lynne. He/we have been looking at voice banking, yes. Best wishes. B

                    Comment


                      #11
                      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
                      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.

                      Comment


                        #12
                        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.

                        Comment


                          #13
                          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. One sided 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"

                          Comment


                            #14
                            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

                            Comment


                              #15
                              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
                              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.

                              Comment

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