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Celebrate the GOOD THINGS

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    iHi Dina and Lynne,

    I got a cleaner once I could no longer clean - of course it's not up to my once higher standards but, as you said Lynne, I've learned to live with that.

    Dina, happy you're a bit chipper today.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

    Comment


      Glad you're feeling better today Dina,

      It's really hard to let go of a clean and shiney home, especially as we spend more time in it. Ironically we had a cleaner when we both worked long hours but now my husband claims the exercise is good for him ! Once he gets going hes fine but he doesn't see if it needs it . I can supervise very well from my powerchair but I have learnt to bite my tongue and let things go .

      Hope there are good things for everyone today .
      Love Debbie x

      Comment


        Hi Lynne, Ellie and Debbie

        I’m not talking about a lack of cleaning or a bit of untidiness, I’m talking about having nothing to eat ( literally surviving on Quavers because I can’t swallow anything else) because my whole big shop from Sainsbury’s disappeared. I’m talking about eight pairs of pyjamas being lost and just the trousers of the last pair being found. I’m talking about important paperwork going missing while I was in hospital, including my Will.

        I’m talking about things that are making almost every healthcare professional who comes to the house start talking to me about Safeguarding Adults procedures.

        I’m talking about trying to cope with the cr*p life continues to hurl at me because MND isn’t bad enough.

        I wish I was just talking about a bit of dust and a lost pair of socks.
        Dina

        Trying to keep positive, but not always managing.

        Comment


          I'm really sorry Dina, I didn't intend to trivialise your situation.

          Love Ellie.
          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
          Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

          Comment


            Oh Dina, I am so sorry about this and I so hope life improves for you very soon.

            You have had such alot to cope with in a short period of time and you always seem so positive and funny. I am sure you dont need me to tell you that it's really vital to have enough calories and nutrition ( and quavers for a treat !) so maybe the healthcare professionals need to consider safeguarding or perhaps you're not ready to go down that route.

            I have everything crossed that tomorrow is a better day for you.
            Sending you hugs
            Love Debbie x

            Comment


              Thank you Ellie and Debbie.

              Debbie, no, I don’t want to have Safeguarding proceedings hanging over me, with the accompanying threat of having to move into a nursing home. I am slowly trying to work my way through the chaos as well as supporting my partner through his own neurological deterioration.

              I apologise for my previous post being unpleasantly phrased but the subject is sometimes hard to cope with and can make me tetchy.
              Dina

              Trying to keep positive, but not always managing.

              Comment


                No worries about being tetchy, Dina;

                We sort of know what you're going through but I very much doubt that many Mnd people have had so much to deal with over the last six months. Please feel free to let off steam, you have posted so many positive things aswell.

                Love Terry
                TB once said that "The forum is still the best source for friendship and information."

                It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                Comment


                  Thank you, Terry. I try not to slide into a cesspit of self pity too often, but sometimes the sides are just too steep.
                  Dina

                  Trying to keep positive, but not always managing.

                  Comment


                    MNDA's action this morning on another thread!

                    Doug

                    Comment


                      Originally posted by Doug Carpenter View Post
                      MNDA's action this morning on another thread!

                      Doug
                      Thank you for mentioning this, Doug. It certainly is a good thing in my opinion. I found that whole thread upsetting and I probably wasn’t the only one .
                      Dina

                      Trying to keep positive, but not always managing.

                      Comment


                        Today’s good thing is a souped up wheelchair.

                        I had been struggling to cope with sitting in my powered chair for more than 2.5 hours at a time, which turned hospital appointments and social trips into marathons of endurance.

                        The signs are promising that it’s about to change with the work carried out today, including bucket seat, multilayer hi-tech pressure-relieving cushion, multi-level tension adjustable back rest, Formula 1-style multi-point car seat harness (ok, that’s a bit of an exaggeration!), tweaks to the hand controls and footrest and a “gutter “ armrest (on order).

                        All I need are some tasteful “Go Faster” stripes and I’ll be ready to wipe the floor with Lewis Hamilton! Thank
                        Dina

                        Trying to keep positive, but not always managing.

                        Comment


                          Those adjustments sound brilliant, Dina and you deserve good things !

                          I hope it's as comfortable as it sounds and you're soon giving Lewis Hamilton a run for his money.

                          Love Debbie x
                          Ps My Salsa mini has " quickie " printed in big letters on the back and frame !!! I would prefer go faster stripes.

                          Comment


                            Thanks, Debbie.
                            Mine’s a Salsa mini 2.
                            Dina

                            Trying to keep positive, but not always managing.

                            Comment


                              I certainly celebrated 2 of the good things in life yesterday, food and music. We went with our daughters to a tapas restaurant and had excellent food before going to a concert.

                              The day didn’t get off to a good start as I fell getting out of the shower. After lying on the floor for a while to get my breath back I managed to haul myself up using the radiator. Bruised, grazed and blooded I knew I had to pull myself together for the evening event but it is surprising how something to look forward to can be motivating. Food and a couple of glasses of wine eased the aches and my daughters wheeled my down to the concert venue. My wife doesn’t like live music because she finds it deafening.

                              It was an 80’s event and my daughters were in their teens at the time so I was a fan of many artists that the girls were following. On stage were Tony Hadley, Mark Almond, Jimmy Somerville, Sonia, Claire Grogan, Nick Kershaw, Toyah, Altered Images, Then Jerico and Boney M. Each performed 3 or 4 songs so it was a bit like listening to a compilation album. The girls knew every word and were hoarse afterwards and I could just humm.

                              9C9FA0B9-EDF2-4C0D-8D76-C152FE902EB6.jpg

                              Love,
                              Barry
                              I’m going to do this even if it kills me!

                              Comment


                                I certainly celebrated 2 of the good things in life yesterday, food and music. We went with our daughters to a tapas restaurant and had excellent food before going to a concert.

                                The day didn’t get off to a good start as I fell getting out of the shower. After lying on the floor for a while to get my breath back I managed to haul myself up using the radiator. Bruised, grazed and blooded I knew I had to pull myself together for the evening event but it is surprising how something to look forward to can be motivating. Food and a couple of glasses of wine eased the aches and my daughters wheeled my down to the concert venue. My wife doesn’t like live music because she finds it deafening.

                                It was an 80’s event and my daughters were in their teens at the time so I was a fan of many artists that the girls were following. On stage were Tony Hadley, Mark Almond, Jimmy Somerville, Sonia, Claire Grogan, Nick Kershaw, Toyah, Altered Images, Then Jerico and Boney M. Each performed 3 or 4 songs so it was a bit like listening to a compilation album. The girls knew every word and were hoarse afterwards and I could just humm.

                                DB03B713-6F68-4265-A7F2-4BE903E08A4B.jpg

                                Love,
                                Barry
                                I’m going to do this even if it kills me!

                                Comment

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