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    Has anyone seen our friend?

    Denise was last seen in the Plymouth area. If you see her let her know we love and miss her. πŸ€—πŸ˜šπŸ˜˜πŸ˜xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

    #2
    denise I was thinking the same...hope all ok...πŸ™πŸ˜˜
    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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      #3
      Just to let you know. I speak with Denise most days. They are both are doing okay.

      I know Denise will be touched by your post

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        #4
        Hi guys

        OK here I am. Sorry I'm sort of getting myself organised. Lots of telephone calls, meeting people and really trying to figure things out. So many people after having nothing at all. Even online supermarket shopping is strange to me.

        Telephone stuff, banking 11 years away and it's all rather odd. I'm also trying to get myself a car. not easy when you haven't got a car.

        Being told you need to move again and not wanting to.

        I kept thinking I'd come back on here but I've honestly been so busy and so many more things added to what I already do.

        I will come back I do think about you all and miss you.

        Hospital today in Devonport. Not sure what time hospital transport will turn up. But the sun is out and things look better already. Young seagull watches me. I give him food my cats have finished with. I've called him joey. Xxxxx

        Love and hugs to all of you. 😘πŸ₯°πŸ˜πŸ˜˜

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          #5
          Hi Denise, good to hear from you. Lots to do eh and good luck with all of that. I hope that your hospital trip goes well today despite waiting around for hospital transport. Love Lynne x
          ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

          I'm staying positive and taking each day as it comes.

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            #6
            So lovely to hear from you Denise I've been thinking about you both and wondering how you are. We've missed you. πŸ₯°πŸ€—πŸ€—

            You have such alot to sort out so best of luck and I hope you can take it relatively slowly. I also hope it goes well at the hospital today.

            Thanks Matthew for starting the thread and to Phil for the reassurance πŸ‘

            Take care Denise,
            Love and hugs
            Debbie x

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              #7
              We'll look forward to hearing more soon πŸ€—

              Good luck with everythingπŸ€πŸ˜˜
              Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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                #8
                denise Thanks for popping by, my lovely. We'll have tea, a crate of chocolate digestives and a box of tissues (on standby) for you whenever you're ready. πŸ€—πŸ€—πŸ€—πŸ€— 😘
                ​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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                  #9
                  Lovely to hear from you Denise, I have been wondering how you are. With relocating in another country and suddenly getting all the uk help I can quite imagine to be so much to deal with. All the best with it all xx
                  Diagnosed July 2020, ALS bulbar onset.

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                    #10
                    Good to hear that you are both ok. Yes, it is hard work. Love and hugs xxxx
                    Copyright Graham

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                      #11
                      They cancelled the hospital appointment. Rushing round got him washed and dressed. Just waiting for transport. Then the phone call. Looks like an administrative error we had no need to go his chest is fine there's absolutely no need for an appointment. I went from oh **** to ok fine its a lovely day why spend it at the hospital.

                      Then a call from gastroenterology (I think that's who?)
                      Can we speak to Stephen.
                      No he doesn't talk on the phone but you can speak to me.
                      Why won't he come to the phone?
                      trouble speaking and communicating, trouble hearing
                      Well we'll have to book a face to face
                      No we won't if you can't talk to me on the phone we're not travelling all the way to the hospital just to have a conversation that could be carried out on the phone.
                      Well you will need to go back to your GP's surgery for referral
                      he wasn't referred from GP's surgery but from one of the dieticians because his peg needs replacing and it should be done just a day trip to the hospital.

                      I left it at that but got intouch with support staff and asked them to intervene. They go on about wasted hospital appointments and wasted use of hospital transport.

                      my daughter phoned with an offer of dinner and a sit in the garden. I was so tired out and annoyed I fell asleep. πŸ˜’

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                        #12
                        In every area of expertise there are good and bad seeds. πŸ˜‰πŸ€—πŸ˜˜πŸ˜xx
                        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                          #13
                          Oh Denise, hugs to you xx
                          Diagnosed July 2020, ALS bulbar onset.

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                            #14
                            This is why I haven't been about. The strain of it all. 😱

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                              #15
                              Originally posted by denise View Post
                              This is why I haven't been about. The strain of it all.
                              Can't say I blame you. Having to constantly deal with such inefficiency would make anyone hide under a rock. πŸ€—πŸ€—πŸ˜˜πŸ˜˜

                              ​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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