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Reason to be cheerful πŸ’“πŸ’

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    Electric Blanket 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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      Reason to be cheerful today.

      We used to be the foster carer for a lad who stayed with us from 10 years to 21.He is coming for lunch today and lives fairly close by in his own tenancy.It’s good to see he turned out being able to live independently.
      Our granddaughter who is 20 is coming after work for a meal too.She keeps saying to me β€œ I will walk this journey with you grandma”Bless her.

      Shame I no longer have an appetite as my sister in law does the cooking and she produces great meals and baking.Oh well the others will enjoy the meals.
      Wishing you all a cheerful day.
      Best wishes
      Mary

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        How lovely Mary C I think I foster carers are amazing. Grandchildren are the bestπŸ’–
        Sorry you've lost your appetite is there something that could help? I'm sure you've looked into it.
        What a great day you have ahead of you 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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          [QUOTE=Ellie;n68921]Electric Blanket πŸ’–πŸ’–

          I bet that feels like heaven 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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            LindaB
            Hi , I have the nutritionist coming on Monday.Appetite diminished gradually.Combination of eating more slowly and then not feeling hungry ever.I used to enjoy my breakfast but even that’s not enjoyable now.I think it’s a physical swallowing deterioration and MND many people on forum report no appetite .Got a swallowing test soon as well.

            My throat feels odd all the time now and I make gurgling noises.( for last few months daily)In fact that’s the thing I am most aware of as I think it will affect my breathing too.Got respiratory appointment next week.
            All I hope is to be kept comfortable .Not looking forward to the appointment as breathing issues and loss of speech are the factors I dread facing.Oh well..has to faced and accepted.

            For now it’s on to enjoying today.
            Just been watching escape to the chateau…Getting into daytime TV..something I never did until I became less independent.
            Best wishes
            Maryxx


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              I know what you mean Mary about day time tv...same.
              Appetite is a difficult balancing act...I have days I'd happily eat nothing and have to just push myself to eat and take a nutrition drink. Other days I'm definitely hungry and eat little and often.
              Enjoy your lovely day 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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                Yes for me too eating becomes more of an ordeal rather than pleasure. But Ellie or anyone could you give me any recommendations about an electric blanket? I am thinking of treating myself to one. I do dearly love my hot water bottle, but it's getting a bit dangerous trying to fill it, and screw the lid on securely. x
                Diagnosed July 2020, ALS bulbar onset.

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                  Originally posted by Heather R View Post
                  Ellie or anyone could you give me any recommendations about an electric blanket?
                  My blanket is a basic underblanket with 3 heat settings (Low, Med, High) and I have it plugged into a timer plug, which is plugs into the socket.

                  It means I can set the blanket to come on and off several times during the night, as well as having it come on 1 hour before my bedtime 😊 Because I get into a warm bed, my muscles relax and I can fall asleep faster. I don't get too hot either as the timer is set on for an hour or so, then off for an hour or so, and back on.

                  Even in summer, I get into a warm bed - it doesn't take much for my measly muscles to get cold and spasm. 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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                    Thanks Ellie, sounds like a good idea x
                    Diagnosed July 2020, ALS bulbar onset.

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                      πŸ’–πŸ’–My granddaughter stayed over and is just making me poached eggs for breakfastπŸ’–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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                        Reasons to be cheerful.

                        Sat in bed earlier watching the snow fall.It’s stopped now.

                        started new medication ( lorazepam)2 days ago and it’s knocked me out( I slept 8 hours woke up and slept another 2 hours overnight.
                        I woke to find I can’t transfer from bed to shower chair( coincidence/ maybe).I now have to rethink best way to transfer…have a few pieces of equipment that should help transfer.
                        OT due on Tuesday .
                        Might get out for a walk later..well push in wheelchair.
                        Best wishes
                        Maryx

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                          LindaB lovely granddaughter you have there Linda. You are ahead of me in the grandchildren sphere , mine are a few months old and a 3 year old, to my 74 years! X
                          Diagnosed July 2020, ALS bulbar onset.

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                            Mary C it’s a constant challenge adapting to new situations isn’t it? All the best with it xx
                            Diagnosed July 2020, ALS bulbar onset.

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                              A lovely neighbour whom I haven’t met before, knocked on the door in the snow to ask if I needed anything x
                              Diagnosed July 2020, ALS bulbar onset.

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                                Sorry about your difficulty transferring Mary. I hope that you find a suitable method to do so 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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