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    Care Advice

    I wonder if any of you wonderful people can point me in the right direction, Phil has took poorly currently in walk in centre 4 hours waiting and I could do with some emergency care cover 🤦🏼‍♀️ Thanks Janette xx
    Janette x

    #2
    I am just starting with a new outfit called Right at Home. I'll let everyone know what they are like.
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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      #3
      Oh no Janette and of course it's a Bank Holiday!!

      Erm... your Council (out of hours number), Hospice, MND Nurse ?
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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        #4
        Originally posted by Ellie View Post
        Oh no Janette and of course it's a Bank Holiday!!

        Erm... your Council (out of hours number), Hospice, MND Nurse ?
        My daughter is trying to ring round now but getting nowhere at the moment xx
        Janette x

        Comment


          #5
          Originally posted by Nettie View Post

          My daughter is trying to ring round now but getting nowhere at the moment xx
          Yes ring your local authority it should give the Emergency Duty Team (EDT) they usually take action within 2 hours. As
          Ellie
          Forum Member
          Ellie says Hospice team too. Good luck xx

          *EDT will put care in place until social services are fully open again
          Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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            #6
            My daughter on the phone still, somebody rang her back gave her another number and she’s on hold again, hopefully we’ll get something sorted soon xx
            Janette x

            Comment


              #7
              Nettie
              Forum Member
              Nettie Hope you got sorted Janette and that Phil is OK.

              Thinking of you 🤗🤗😘

              Love Ellie.
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

              Comment


                #8
                Hi Ellie, eventually got through to someone who did a assessment over the phone and said they will ring back later today 🤞🏻
                phil still not well at all although he did sleep a little better, they’ve said it’s arthritis but I don’t think it is, it might sound daft but he has a lot of my symptoms I’ve been saying for a while I’m sure you’ve got what I’ve got 🤷‍♀️ You never know do you. Thanks for thinking about us 😘
                Janette x

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                  #9
                  Originally posted by Nettie View Post
                  ... it might sound daft but he has a lot of my symptoms I’ve been saying for a while I’m sure you’ve got what I’ve got
                  Life couldn't be that cruel, could it...

                  Will he see his GP? xx
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  Comment


                    #10
                    He’s got to go for bloods tomorrow if he can get appointment, Phil thinks I’m mad even thinking it but I see the signs, he probably won’t even mention it 🤷‍♀️🤦🏼‍♀️ Janette x
                    Janette x

                    Comment


                      #11
                      Originally posted by Nettie View Post
                      Phil thinks I’m mad even thinking it but I see the signs
                      Oh Janette, you must be beside yourself with worry - are you carrying this worry on your own?

                      If you want to say what the signs are, please do, or not, no worries. xx

                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                      Comment


                        #12
                        He chokes on his food and drink more than I do 🤦🏼‍♀️ I’ve seen the odd twitches in his legs, but this week he can’t move his arms, can’t walk properly, can’t get up from settee and can’t sleep because he can’t get comfy.
                        I just feel like I’ve caused it by looking after me 😢 Janette xx
                        Janette x

                        Comment


                          #13
                          Its not you.
                          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                          Comment


                            #14
                            Janette I get where you are coming from, I too have had twitching in the arms and said to Albert only yesterday could it even be possible, I'm writing it off as a trapped nerve or something, BUT I think it's the situation that gets you thinking the worst possible thing, you will be looking for everything although Phil seems to have several pointers for something,

                            I don't want to be condescending here but unless someone tells me different I don't see how you could possibly have caused this for him, looking after you can perhaps cause some problems for him but surely to god not this, does anyone know of any twosome that had this thing together?

                            For me I think about when we were both sat in a bar covered with plants and shrubs etc, about 30 years ago, in Turkey and they decided to "Spray the Mossies" we both took full blast of what I suspected was not something we would have used in this country - is it possible this is a connection? as soon as I get a twinge it comes back to my mind, I'm probably being daft, so what I am trying to say is don't blame yer sen - easy to say though,

                            I'll be very interested in how the emergency care pans out for you,

                            Best wishes

                            Sue
                            Husband Albert diagnosed PMA Feb 21

                            Comment


                              #15
                              Originally posted by Nettie View Post
                              He chokes on his food and drink more than I do 🤦🏼‍♀️ I’ve seen the odd twitches in his legs, but this week he can’t move his arms, can’t walk properly, can’t get up from settee and can’t sleep because he can’t get comfy.
                              Oh Janette, I can understand why you're so worried about Phil - BUT - that's all 4 limbs together plus swallowing difficulties, MND doesn't come on like that. He'd have trouble with fine motor skills before his arms sustained that much motor neuron damage.

                              He won't have the agility of a man 10yrs his younger, but I'm glad he's getting himself checked out.

                              And Janette, you are not to blame for anything... This might prompt him to get in some outside help 🤞🤞

                              Biggest hug to you xx

                              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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