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    Morning looks frosty out but sun is shining.

    keno on no that's not such a good start...well done your brotherπŸ˜‡. Enjoy your coffee 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. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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      Morning Linda and all xx
      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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        Good afternoon all 😘😘 Happy Friday πŸ‘πŸ‘

        keno Hope you're warm and comfy sleeping in your RR 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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          Originally posted by Ellie View Post
          Good afternoon all 😘😘 Happy Friday πŸ‘πŸ‘

          keno Hope you're warm and comfy sleeping in your RR πŸ€—πŸ€—
          Thank you
          I have ordered a 155 by 120 cm cover
          they are going to look at what can be done as it's that last 15 degrees to upright sitting on the bed
          It's all funny

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            Originally posted by keno View Post
            they are going to look at what can be done as it's that last 15 degrees to upright sitting on the bed
            Oh, doesn't your bed back raise to 90 degrees, or close to 90?

            There are profiling beds which rotate but it's a lottery as to whether or not you'll be supplied with one - I know of one person who got one and one person who was refused one.

            They can do this - I don't know if this would solve your issue:

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

            ​

            Comment


              Originally posted by Ellie View Post
              Oh, doesn't your bed back raise to 90 degrees, or close to 90?

              There are profiling beds which rotate but it's a lottery as to whether or not you'll be supplied with one - I know of one person who got one and one person who was refused one.

              They can do this - I don't know if this would solve your issue:

              Yes, the bed raises up but leaves me with legs over the edge and me about 15 degrees to raised part with nothing to grip onto.
              very little strength in my arms to push me up.
              if the pillow slips from under my head then I am stuck.
              It's all funny

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                LindaB Ellie you are right, it has to be sorted. The supervisor came with the main carer this morning so it was better. But at lunchtime it was just the main carer(who is supposed to be experienced in dealing with MND patients) and less experienced carer and they were back to leaving the commode uncleaned and loo not flushed. It could be a long (and expensive) haul! We are going to make a list of detailed instructions to be ticked off before they leave each time.
                Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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                  Rosemary6NT good idea 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. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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                    Originally posted by Rosemary6NT View Post
                    We are going to make a list of detailed instructions to be ticked off before they leave each time.
                    Do you have a agreed Care Plan with the agency Rosemary (you should) - my care plan has a daily task list, covering all sorts of tasks, mind you, flushing the loo is a given!!

                    I think that the task list is a good idea too: no escaping, no excuses. 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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                      Originally posted by Ellie View Post

                      Do you have a agreed Care Plan with the agency Rosemary (you should) - my care plan has a daily task list, covering all sorts of tasks, mind you, flushing the loo is a given!!

                      I think that the task list is a good idea too: no escaping, no excuses. xx
                      It hasn’t been written yet, supervisor said next week…
                      Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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                        I'm up before the birds. Then again I can hear owls sometimes. I'm contemplating a marmalade sandwich. Should I or shouldn't I?
                        when i can think of something profound i will update this.

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                          Good morning stalwarts. Perchance you realise that that being the weekend this is a ghost town. Don't worry though, some of us are always here for you. Yes you. 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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                            Good morning
                            hate marmelade so porrage for me
                            It's all funny

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                              Morning comrades....weetabix & a coffee for me. Have the best day possible🌞🌞🌞🌞🌞
                              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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                                Morning xx
                                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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