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    We have a sea breeze so it's just right. 😎
    when i can think of something profound i will update this.

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      Good morning folks 😘😘

      Blue skies sure help any blue feelings πŸ‘πŸ‘

      The new, purpose built wetooms here aren't fit for purpose πŸ™„πŸ™„ Apart from us almost getting heatstroke in the bathroom this morning, the shower chair/commode doesn't fit over the loo and the place floods from the shower!!
      ​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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        Originally posted by Ellie View Post
        The new, purpose built wetooms here aren't fit for purpose πŸ™„πŸ™„ Apart from us almost getting heatstroke in the bathroom this morning, the shower chair/commode doesn't fit over the loo and the place floods from the shower!!
        Oh dear 😳 that's very poor.
        Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive 😺.

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          Originally posted by Tabbycat View Post
          Oh dear 😳 that's very poor.
          Isn't it... I mean it's not exactly rocket science 🀨
          ​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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            Oh I remember some wonderful times when Stephen fitted our bathrooms. He did everything the electrics, tiling the lot. It was the plumbing that was the most interesting. Him turing the water on and me checking for leaks. Oh did he swear. It was as if I willed things to leak. Like I'd do that. So I got to turn the water on and he checked for leaks. I couldn't always hear him tell me to turn it off!

            The commode we have doesn't fit over the loo. I don't know what or if they have a plan for wet rooms.

            πŸ€”
            when i can think of something profound i will update this.

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              denise The commode we have doesn't fit over the loo. I don't know what or if they have a plan for wet rooms.

              I thought ours didn't until our OT came and adjusted it to make it taller. Might be worth asking. We now have a new tilt in space shower chair, top of the range apparently but I've had to rake all the extra fancy bits off of it to fit it through doorways- but it fits over the geberit loo - but not in the recline position.
              Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicates with eye gaze.

              Respiratory function - COΒ² Up

              No speech but sense of humour still fully intact.

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                Doorways and hallways are definitely a challenge. Come to think of it most things are then they become the new normal.

                Morning everyone. I've been awake for an hour at least. It's very warm and those seagulls are really making a noise.
                when i can think of something profound i will update this.

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                  Morning everyone. For some reason I hadn't been on this thread a few days. Good to catch up and watch the comments change as the temperature rises!!

                  I'm going to try to get out of bed today and enjoy at least some sunshine. I hope you all enjoy the day x
                  Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                  Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                  Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

                  Comment


                    Morning team!
                    An admin day for me today. Sorting the paperwork for my medical retirement pensions.
                    Watched a bit of the wheelchair tennis. Hard work!
                    Hope you all get to enjoy a bit of sunshine.
                    Hi, I'm Eddie.
                    Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
                    Still walking and talking, and wondering what the future will bring.

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                      Morning everyone. How annoying when things don’t fit or work properly. My outside doors don’t open and close properly. Today I am going to be holed up in bed with the ventilator and fan on, hoping for cooler weather! 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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                        You should see the state of some of my door frames 🫣🫣🫣
                        Foxes Never Quit πŸ’™

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                          Originally posted by Heather R View Post
                          Today I am going to be holed up in bed with the ventilator and fan on,
                          Are you poorly Heather or is it merely to keep cool? 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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                            Good afternoon folks 😘😘

                            Had physio this morning in the gym - wish it didn't have floor to ceiling mirrors 😬 - saw the Consultant, had lunch and am 'on view' later to two new doctors: today is New Doctors day here, bad day to get ill 😏
                            ​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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                              Originally posted by Ellie View Post

                              Are you poorly Heather or is it merely to keep cool? xx
                              Thanks for asking Ellie. Last heatwave I felt so bad with horrid headaches, feeling very sick, very high blood pressure, etc, so I was really dreading this one. But my son has just bought me a small air conditioner unit for my bedroom and it’s made such a difference, what a relief. 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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                                Heather R we have today bought a cheapish desktop fan which turns. Got it up on a box to circulate air around lounge and really made a huge difference. Would probably notice it more if my lab wasn't sitting directly in front of it ears flapping
                                Diagnosed June 2022. Confirmed MND which is currently PLS. Limb onset.

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