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    Hooray it's arrived

    So finally my care chair has arrived 😃 this after a new OT had contacted me ( not spoken to anyone for months ) and after MNDA got involved . It's meant banging on doors etc but it should not be like this for anything! Maybe it's just the world's we live in . Much love to all who are fighting and living with this insipid disease x

    #2
    Derbyram21 great! At last! Enjoy! No you shouldn’t have had to fight for it, mine got without fuss and paid for by mnda. 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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      #3
      Derbyram21 so what colour is it?

      Have you found a perfect spot? Is it as comfy as you thought it would be, or do you think it will need some wearing in.

      There was a chair (before this disease) that I kept looking at in a shop for two years. It was so comfy in the shop as so many people had been sitting in it.

      Of course I got a new one, so it took a few years for it to be just right.

      I have had my sofa for twenty years and I have the corner just right now

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        #4
        Excellent news, tho its so annoying to hear yet again someone has to fight to get what they are entitled to.

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          #5
          Originally posted by Derbyram21 View Post
          So finally my care chair has arrived
          Is that a rise recline armchair?

          If it is, I hope you're catching some ZZZZZs in it this afternoon 😴😴😴 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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            #6
            Hi Everyone sorry for the late replies yes it is comfy and a better riser recliiner than what I had purchased. It's quite big and is the one I was measured for in January this year..I am now able to get some zzzz in the afternoon. I now have to sell it give away my purchase .x

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              #7
              It sounds wonderful!

              I must admit I find it very difficult to sleep during the day, I wonder if it's because when I was sharing a house in Plymouth I fell asleep on my bed; I woke to find my house mates had filled my pockets with toothpaste .

              We also used to have very large gaps in the double glazing, so what we would do if anyone went away for the weekend would be to take the glazing out and apart and put their clothes in between. So it really was window dressing .

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                #8
                Originally posted by Christopher View Post
                It sounds wonderful!

                I must admit I find it very difficult to sleep during the day, I wonder if it's because when I was sharing a house in Plymouth I fell asleep on my bed; I woke to find my house mates had filled my pockets with toothpaste .

                We also used to have very large gaps in the double glazing, so what we would do if anyone went away for the weekend would be to take the glazing out and apart and put their clothes in between. So it really was window dressing .
                That sounds very naughty 🤭
                Were you a student or a booty/‘Royal’? That sounds like the sorts of things expected from a ‘frat house’ or ‘squaddies’… I particularly enjoyed the ‘window dressing’ 😂
                Hi, I’m Pauline. Keeping positive, working through a bucket list with the love of my life, my husband Gareth.

                Diagnosed July 2022 Bulbar onset ALS. PEG fitted but not used yet. Speech poor, some swallowing issues, right arm weakness and loss of dexterity, left arm getting weaker. Starting to feel unsteady on feet but still mobile.

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                  #9
                  Derbyram21 enjoy your afternoon ZZZs; I’m jealous 😉
                  Hi, I’m Pauline. Keeping positive, working through a bucket list with the love of my life, my husband Gareth.

                  Diagnosed July 2022 Bulbar onset ALS. PEG fitted but not used yet. Speech poor, some swallowing issues, right arm weakness and loss of dexterity, left arm getting weaker. Starting to feel unsteady on feet but still mobile.

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                    #10
                    Mrs. Taff the other thing that would get done almost every night would be the spindle bit from the middle of your door handle would get taken out, so you couldn't open your door. The trick was to always keep a fork in your room as the back of the fork would fit into the centre of where the door handle should be so that you could get out of your room.

                    Not forgetting when someone left their room to turn the radiator on full and then put a bowl of cabbage just below. The stink was awful.

                    It wasn't me sir

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                      #11
                      Christopher - but did you ever try the super glue everything exactly upside down on the ceiling? That's always fun...
                      Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

                      Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!

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                        #12
                        TinyLady

                        No never did the super glue trick.

                        There was always a milk bottle of water outside your room leaning on the door so it made the floor wet.

                        It's making me laugh.

                        Its just reminded me of so many things. Most of which cannot be typed on here.

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                          #13
                          Loving the mischief and mayhem! Most of mine can’t be talked about in polite company!
                          The tamer ones were locking someone in their office if they made the mistake of leaving the key on the outside, or colouring in the inside band of someone’s beret with lumicolour pen, so when they took it off after wearing it they had a line across their forehead, or shaving one eyebrow off or drawing/writing something amusing in tippex on the forehead of someone silly enough to doze off in company… wasn’t me guv, honest 😇
                          Hi, I’m Pauline. Keeping positive, working through a bucket list with the love of my life, my husband Gareth.

                          Diagnosed July 2022 Bulbar onset ALS. PEG fitted but not used yet. Speech poor, some swallowing issues, right arm weakness and loss of dexterity, left arm getting weaker. Starting to feel unsteady on feet but still mobile.

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