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    #16
    shelly21 yes it is hun 🤦🏼‍♀️ We shouldn’t have to wait as long as we have, but we’re nearly there now and can’t wait 🚿🤗
    much love Janette xx
    Janette x

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      #17
      Nettie

      It will be worth it.

      Thomas (with MND) had no shower for 5 months, only bed baths from me (poor soul)

      Moved house (second time in 8 months)

      BUT

      Hot showers in amazing wet room

      So totally worth the stress

      Waiting for lowered front door *wheel chair accessable my arse - as we say in Scotland)
      So still house bound.

      Donna

      Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020.

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        #18
        shelly21 same here I’ve not had a shower for well over a year 🤦🏼‍♀️ Had a ramp fitted couple of months ago I can get out but can’t get back in!! So waiting for new front door 🤦🏼‍♀️ X
        Janette x

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          #19
          Originally posted by Nettie View Post
          Had a ramp fitted couple of months ago I can get out but can’t get back in!!
          Are you sure Phil didn't organise it that way Janette 🤣🤣

          Not long to wait for the Spa Day 🤞🤞😘

          ​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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            #20
            😂😂😂 you’re probably right Ellie 😂
            I don’t think it will be finished this week 🤦🏼‍♀️ The plasterer is off sick for a start so it’s looking unlikely but hey ho 🤗 love Janette x
            Janette x

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              #21
              Oh no, Janette, what bad luck. Hope your spa day is not long off! Xx
              Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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                #22
                Heather R i know 🤦🏼‍♀️ But I’m the queen 👸 of waiting 😂
                patience is a virtue love Janette x
                Janette x

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                  #23
                  Originally posted by Nettie View Post
                  shelly21 same here I’ve not had a shower for well over a year 🤦🏼‍♀️ Had a ramp fitted couple of months ago I can get out but can’t get back in!! So waiting for new front door 🤦🏼‍♀️ X


                  We had the same issue in the old house. Only discovered I couldn't push Thomas up the temp ramp, after we went out.

                  And couldn't get back in, half way up, roll back down.

                  A neighbour seen me struggling and came out to help.

                  Thank goodness

                  Donna

                  Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020.

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                    #24
                    Nettie I bow to your patient queenship x
                    Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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                      #25
                      Originally posted by Nettie View Post
                      ... patience is a virtue
                      I used to be the most impatient person and being dependent upon others has taught me patience, took a while, but I have learned to be Zen about things outside of my control. 👼 🧘‍♀️

                      Now that I think of it, my Buddha Belly suits me 🤣🤣🤣
                      ​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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                        #26
                        I learnt patience when I was driving professionally. Especially on the car park that is known as the M25. 😁🤗👍😍xx
                        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                          #27
                          Well it will be testing my patience they’ve just told us it will take another week 🤦🏼‍♀️
                          So I’ve been doing a bit of crafting while I still can to keep me sane 😬 Janette x
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                          Janette x

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                            #28
                            They are beautiful Nettie . You are so creative and talented.

                            Your spa day must seem like a distant dream to you after everything has gone so wrong. You will get there and there'll be no keeping you out of that shower.

                            Love and hugs xx😘🤗

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                              #29
                              Thanks Deb, it takes me longer now and my eyes aren’t what they used be I’ve just ordered myself a magnifier light to make it a bit easier 🤗
                              Yes will have to wait for spa day but will have to find a way to wash my hair soon 🤦🏼‍♀️😂 love Janette xx
                              Janette x

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                                #30
                                Nettie I'll gloss over the extra week situation 🤐

                                The hearts are lovely Janette, great to keep busy - Christmas presents? 🤗😘
                                ​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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