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    #16
    Originally posted by Mary C View Post
    Hi Rosemary, It makes sense that the more physical decline we experience the lower we are likely to feel low in mood.
    Think you were getting a NIV to help breathing.Is the NIV helping you get some sleep.?
    best wishes
    Mary
    I’m still trying to get used to it. I haven’t tried it during the night yet. Probably tonight. Unfortunately the mask means I can’t wear my glasses to watch or read with it on.
    Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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      #17
      Originally posted by LindaB View Post
      I think counselling is a great idea for any of us.

      I do also find benefits from mindfulness...it works for me. Headspace App is good...there's also episodes on Netflix.

      There's a good book Mindfulness in Eight Weeks by Michael Chaskalson. With guided practices.

      😘
      A friend has mentioned Headspace, I must look into it
      Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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        #18
        Rosemary6NT I'm lucky my glasses just fit on top of the mask. They are a vintage cats eye style...maybe that's why🤷🏼‍♀️

        Annoying if you can't read or watch TV using NIV...maybe your respiratory nurse can make some suggestions? 😘
        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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          #19
          Originally posted by LindaB View Post
          Rosemary6NT I'm lucky my glasses just fit on top of the mask. They are a vintage cats eye style...maybe that's why🤷🏼‍♀️

          Annoying if you can't read or watch TV using NIV...maybe your respiratory nurse can make some suggestions? 😘
          I may be able cope if I get new distance glasses. At the moment I have variefocals
          Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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            #20
            Rosemary6NT I hope that you can get distance glasses quickly. A call to your optician may get you a home visit. Or if you know your distance prescription somebody could pick an off the shelf pair up for you from Boots or somewhere. Good luck xx
            Last edited by Lynne K; 8 January 2022, 10:00.
            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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              #21
              Originally posted by Rosemary6NT View Post
              Unfortunately the mask means I can’t wear my glasses to watch or read with it on.
              Rosemary, ask for a different mask, one which allows for wearing glasses, and do not feel bad about asking !! It's a quality of life issue...

              This is the mask I wear, it covers the mouth and nostrils, the same as your one, but it doesn't go up the face - it's called the Amara View, by Philips Respironics, who also make a similar fit mask, the DreamWear, and there are nasal pillow masks too. xx



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              ​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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                #22
                LindaB
                I use you tube Christian meditations sometimes before Night time sleep.I had months of counselling until I felt I had talked through everything I wanted to.

                Thankfully I sleep ok but due to dry mouth I-wake a few times for a drink of water and have no problem nodding back off.Dry mouth ongoing for 18 months despite sprays, artificial saliva, pineapple juice etc.

                A grey rainy day.A friend just left so back to the book I am enjoying.Don’t feel like going out today so far.Have a good day.
                Best wishes
                Mary xx

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                  #23
                  Mary C I think because of our profession we know counselling works. You have a good day too. My granddaughter visiting☕🍰
                  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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                    #24
                    Originally posted by Ellie View Post
                    Rosemary, ask for a different mask, one which allows for wearing glasses, and do not feel bad about asking !! It's a quality of life issue...

                    This is the mask I wear, it covers the mouth and nostrils, the same as your one, but it doesn't go up the face - it's called the Amara View, by Philips Respironics, who also make a similar fit mask, the DreamWear, and there are nasal pillow masks too. xx


                    Oh that’s good to know Ellie, I’ll see if I can get that sorted xx
                    Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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                      #25
                      Sending a hug Mary, you offer me great support so I would like to return the complement xx

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                        #26
                        Thanks for sharing everyone, it helps to know you all experience these understandable ups and downs like me 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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