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Reason to be cheerful πŸ’“πŸ’

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    richard It was an apartment in The Sands on North beach. My apartment wasn’t accessible (I can still do stairs), but I did see someone in a wheelchair come out of the building. Did have a ramp down to the flat promenade though, which was great for me with a rollator.
    I prefer Cornish coastline where I grew up, but so far for me now, and my favourite beaches definitely not accessible! 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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      Reason to be cheerful.

      Bought the Xmas cake ingredients ...I can no longer make the cakes as hands are weak but my lovely sister in law who doubles up as my carer,gardener, cleaner and special friend will make several for Xmas pressies from us along with mince pies.

      Had a lovely evening with my husband Steve watching a film with a glass of wine.
      Counting my blessings....simple things bring me pleasure.Making memories.
      Best wishes
      Mary

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        Making the most of the little things. We'll played Soul Sister. 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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          What a lovely sister in law, Mary, and this disease really can help us appreciate some simple things that we were too busy to really appreciate before. Xx
          Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

          Comment


            Originally posted by Mary C View Post
            Reason to be cheerful.

            Bought the Xmas cake ingredients ...I can no longer make the cakes as hands are weak but my lovely sister in law who doubles up as my carer,gardener, cleaner and special friend will make several for Xmas pressies from us along with mince pies.

            Had a lovely evening with my husband Steve watching a film with a glass of wine.
            Counting my blessings....simple things bring me pleasure.Making memories.
            Best wishes
            Mary
            Lovely reasons to be cheerful Mary....home made Christmas goodies & a truly special sister in law πŸ€ΆπŸŽ…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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              Used my newly acquired bath swivel chair this morning for a shower. All went ok and just need to remember to be well organised e.g. Everything to hand.
              So I'm smelling sweet...Karma body wash from Lush. Also smothered in body shop body butter Shea....my fave. πŸ’–πŸ’–

              Ps tiring task but mission accomplishedπŸ˜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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                As I am a gentleman i won't say what your post has done to me. πŸ˜‰πŸ˜πŸ˜ŽπŸ˜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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                  Originally posted by LindaB View Post
                  Everything to hand.
                  And lids open - hard enough with dry hands, nigh on impossible with wet hands 😟πŸ₯΄

                  Good to hear you're smelling good - πŸ₯‡ for perseverance 😘😘

                  ​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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                    LindaB One of my lovely carers gave me an orchid 2yrs ago - here it is now, in full bloom and has been like this for 5 weeks (kept forgetting to ask someone to take a photo of it) I can't take any credit for the plant's health 😏

                    White Orchid 171121.jpg

                    I'm half afraid to ask how your plant is getting on... Mind you, it took this orchid plant a year to really find its mojo. 😘
                    ​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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                      Ellie looks great...2 years...that's good goingπŸ‘πŸ»love the red pot too. I've moved mine to the kitchen window sill....still looks ok & I'm watering as you suggested....a soak for 15 minutes once a week. I hope mine lasts for 2 years πŸ‘πŸ» πŸ˜‰πŸŒΈπŸŒΈπŸŒΈπŸ’š

                      Was lovely of your carer to give you such a nice gift...you must be well thought ofπŸ’–
                      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 LindaB View Post
                        Was lovely of your carer to give you such a nice gift...you must be well thought ofπŸ’–
                        Works both ways - I really appreciate what they do for me and think highly of them πŸ‘πŸ‘ I am lucky in having a great bunch of carers, we all get on well πŸ’š

                        ​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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                          Ellie I'm glad it works so well for you & your carers...a positive story to end the dayπŸ’–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 Ellie View Post
                            LindaB One of my lovely carers gave me an orchid 2yrs ago - here it is now, in full bloom and has been like this for 5 weeks (kept forgetting to ask someone to take a photo of it) I can't take any credit for the plant's health 😏

                            White Orchid 171121.jpg

                            I'm half afraid to ask how your plant is getting on... Mind you, it took this orchid plant a year to really find its mojo. 😘
                            That’s lovely Ellie, in fact the best orchid that I’ve seen x
                            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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                              Aww thanks Lynne. I can't take much credit for it - I just provide the window ledge, Mother Nature and a carer who gives my plants a weekly drink do the hard work 😘
                              ​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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                                πŸ’–πŸ’–Strictly & it's musicals weekπŸ’–πŸ’–πŸ‘―πŸ•ΊπŸ’ƒmy reason to be cheerfulπŸ’–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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