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DAD - MND diagnosed now. What next?

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    #61
    Originally posted by Positive vibes View Post
    Hey all



    Any last minute advice is most welcome..... thanks in advance
    1. Donโ€™t panic, you are already doing a great job
    2. Donโ€™t feel pressured into making decisions today
    3. Do make sure the medics understand what your fathers wishes are
    4. Remember you the family are always in control.

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      #62
      Thanks all, when I say last minute I am about to go to the parents now, this has helped calm me down! Loin-girding is launching....
      Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

      Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

      Comment


        #63
        Keep Calm and panic ๐Ÿ˜‚
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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          #64
          Positive vibes How did it go?

          Richard
          Richard

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            #65
            Originally posted by richard View Post
            Positive vibes How did it go?

            Richard
            Hi Richard

            Thanks for asking!

            It went very well, I am really impressed at the nurses professionalism and kindness, they delicately prised out all Dad's symptoms, despite him wanting to gloss over it all and put the best spin on it. And they talked over all the specialists who will contact him, OT, physio, dietician, plus monitoring of his liver function via blood tests, and monitoring of his breathing via a trip to the local hospital. I am in awe. There is basically a whole team of them out there to help him.

            Very reassuring, the best thing, these are home visits, apart from the visit to test breathing, and obviously, follow ups with consultant neurologist. There is even 'day therapy' available for him to meet other MND patients, with massage, entertainment (quizzes, etc), and other possible alternative therapies open to him. At the moment, he feels comfortable he is able to drive there himself for the day therapy, but obviously he will be under review from the specialists. He did refuse counselling, which I expected, but, I would be open to that myself....!

            It makes me feel hopeful for him that there is so much expert support. And my fear over their dismay at the mayhem at their home wasn't an issue. Mum has been cleaning and clearing with having 'visitors', so the only obvious signs were furniture all at one end and the Covid screen. Such lovely ladies, who even put up with my over-excited interruptions, because I was eager to get questions out.

            I think we will all sleep a bit better tonight. So much for us to take in.... I feel really drained now, so, goodness only knows how Dad feels.
            Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

            Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

            Comment


              #66
              Originally posted by matthew55 View Post
              Keep Calm and panic ๐Ÿ˜‚
              Ha! Already done that! Where is the wagging finger emoji when you want one?
              Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

              Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

              Comment


                #67
                Originally posted by Bowler View Post

                1. Donโ€™t panic, you are already doing a great job
                2. Donโ€™t feel pressured into making decisions today
                3. Do make sure the medics understand what your fathers wishes are
                4. Remember you the family are always in control.
                1. I did my swan impression. Calm on the surface, legs going like the clappers under the water...
                2. They were lovely, so, no pressure felt.
                3. Totally took on board my Dad's feelings/wishes.
                4. Correction. Dad was totally in control. We were the nervous wrecks.

                Thank you Bowler!
                Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

                Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

                Comment


                  #68
                  Originally posted by richard View Post
                  Have you thought what is needed? Indoor wheelchair, shower stool, gripper to pick things up, ask what financial help is available although most is means tested and if you have tuppence in savings you may not get it. Drinking cups, Carers when needed. Donโ€™t forget to say Iโ€™m new to this what should I be asking and looking for?

                  The DS1500 is great you will now get some funds about ยฃ150 per week if itโ€™s the full allowance. May I suggest if you are having to post it itโ€™s sent by Special Delivery not the usual Signed For post. You donโ€™t want it to be lost.

                  i know my ramblings will not be a great help and Iโ€™m sure others will help as well.

                  Richard
                  Apologies for answering these posts backwards, Richard...

                  Sadly any adaptations Dad isn't keen on, even down to the riser/recliner they offered. We discussed AA, and I showed the DS1500 form to them (awaiting application forms now).

                  I used that question, ta Richard! And asked Dad if he had any more. Ramble away these tips were a help, thanks Richard...
                  Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

                  Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

                  Comment


                    #69
                    Originally posted by richard View Post
                    Oh and the MNDA often give grants but not retrospectively. Give them a call when you can.
                    I have phoned and discussed AA with them, but, not a grant. Thanks again Richard! You are a star...
                    Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

                    Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

                    Comment


                      #70
                      Positive vibes There is a real flurry at first with getting baseline measurements, then it does taper off and becomes much less frenetic.

                      And these healthcare visitors don't usually co-ordinate their schedules so, if your dad finds he has appointment after appointment, he can ask for one or more to be rescheduled!! No point in him being worn out...

                      Now, you put your feet up, have a cuppa/glass of wine/hot chocolate, and breathe... ๐Ÿค—
                      โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                      โ€‹

                      Comment


                        #71
                        Originally posted by Ellie View Post
                        Positive vibes There is a real flurry at first with getting baseline measurements, then it does taper off and becomes much less frenetic.

                        And these healthcare visitors don't usually co-ordinate their schedules so, if your dad finds he has appointment after appointment, he can ask for one or more to be rescheduled!! No point in him being worn out...

                        Now, you put your feet up, have a cuppa/glass of wine/hot chocolate, and breathe... ๐Ÿค—
                        Thanks Ellie!

                        After months of disappointment, it feels like action stations at last. That's a good tip, thank you.

                        I have been partaking of medicinal chocolate, and cocoa, and eying up the gin.... the dog is unimpressed as I can't share this with her... ha!
                        Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

                        Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

                        Comment


                          #72
                          Being Human can be a real bitch ๐Ÿ˜‰๐Ÿ˜€x
                          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

                          Comment


                            #73
                            The time will soon be here that it is a fond memory. Don't waste the now. ๐Ÿ˜€x
                            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

                            Comment


                              #74
                              Positive vibes Thank you so much for sharing everything I and indeed everyone else wish you the very best in this journey. Remember we are all here for each other.

                              Richard
                              Richard

                              Comment


                                #75
                                Originally posted by matthew55 View Post
                                Being Human can be a real bitch ๐Ÿ˜‰๐Ÿ˜€x
                                In my best 'street cred accent' true dat! x
                                Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

                                Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

                                Comment

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