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Decided to move upstairs

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    #16
    Originally posted by Bowler View Post
    Wayne just to say we told all the medical people we would not be attending any hospitals, GP’s or clinics due to travel and toileting issues. The only team that point blank refused to home visit was dietitian which was no loss because Sarah our salt was excellent. We even had a consultant come to us a couple of times. Do what’s right for you mate.
    Most of it is zoomy now anyway.
    Thanks bowler will keep that in mind if I need to see anyone. With no cure I’ve became almost like I don’t want to see anyone. Quicker the better if I’m honest. Life up here is ok now I’ve got sky installed and the golfs on. Hope you all have a great day xx

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      #17
      Enjoy the golf and sky, well done for making the most of what you have. Keep us entertained with any neighbour goings on ?? x
      Diagnosed July 2020, ALS bulbar onset.

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        #18
        House44 Glad it's working out for you, Wayne. 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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          #19
          Going downstairs is massively overrated. 👍
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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            #20
            My bedroom is set up with tv chair and a small table, wet cell available, and a small office across the landing. I can get down the stairs ok, but not up them on my own. It was my first day upstairs today.
            Diagnosed 2nd Jan 2020
            Both arms/shoulders affected, left worse than right.
            Progressive Muscular Atrophy suspected

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              #21
              Originally posted by Heather R View Post
              Enjoy the golf and sky, well done for making the most of what you have. Keep us entertained with any neighbour goings on ?? x
              ha.. yeah, I am now a curtain twitcher,
              Diagnosed 2nd Jan 2020
              Both arms/shoulders affected, left worse than right.
              Progressive Muscular Atrophy suspected

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                #22
                Originally posted by Beemer View Post
                My bedroom is set up with tv chair and a small table, wet cell available, and a small office across the landing. I can get down the stairs ok, but not up them on my own. It was my first day upstairs today.
                Enjoy your new environment Dave and let us know if you see any excitement from your window.
                I’m going to do this even if it kills me!

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                  #23
                  Obviously it's a different decision for each of us. I couldn't bear to be trapped upstairs. I need to be able to see my garden, so most of my family know that if I end up in a hospital bed all day it will be in the dining room which has bi-folding doors into the garden. I spend all day in there at the moment and usually have a sit outside at some point in the day. I love just sitting listening to the birds.
                  Each day is made easier with a bit of humour.

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                    #24
                    Hope you have everything you need in your new living space Dave. X

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                      #25
                      Dave, does your room overlook the front or rear of the house?

                      You'll have to install a dumb waiter for your meals - pity you wouldn't fit in it 😉 x
                      ​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
                        Hi Dave, hope you are happy with your move upstairs.I guess with MND we get used to adapting to change.
                        I spend a few hours a day in our bedroom too as it’s comfortable and I like to sit on bed reading, googling, etc.
                        I do like getting outside though as enjoy fresh air, admiring our garden, listening to the birds and it gives me a peaceful feeling.
                        Best wishes
                        Mary

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                          #27
                          My first full day upstairs = a numb bum, watched a lot on the Firestick, and had meals brought up to me after my wife got back from cleaning at her fathers house. My room is north facing at the front of the house. I have an Alexa unit in every room except the bathroom, but I have a module wired to the bathroom lights connected to Alexa to switch the light s on and off. I have a Ring camera doorbell fitted at the front door, and a 360 wifi camera facing the rear garden, so I have access all areas.
                          Diagnosed 2nd Jan 2020
                          Both arms/shoulders affected, left worse than right.
                          Progressive Muscular Atrophy suspected

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                            #28
                            Beemer sounds like you have got yourself setup really well Dave. Do you get down stairs at all now. I mean when your wife or someone else is there to help.

                            I’ve just finished the BOSCH series on Amazon.

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                              #29
                              Originally posted by Bowler View Post
                              Beemer sounds like you have got yourself setup really well Dave. Do you get down stairs at all now. I mean when your wife or someone else is there to help.

                              I’ve just finished the BOSCH series on Amazon.
                              Not yet trapped up here Bowler, My wife is dropping me off at my daughters flat for the day whilst she goes hill walking with friends.
                              I have a habit of falling over, so she don't like to leave me on my own
                              I will have a look at this BOSCH series, thanks
                              Diagnosed 2nd Jan 2020
                              Both arms/shoulders affected, left worse than right.
                              Progressive Muscular Atrophy suspected

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                                #30
                                I read the books on Harry Bosch and I can thoroughly recommend the series on Amazon.
                                I’m going to do this even if it kills me!

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