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    Hugs to everyone. It's better than any meds.

    Tiny lady hope things improve quickly.

    Love to all of you
    ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ’•
    when i can think of something profound i will update this.

    Comment


      denise - My fighting pants have been firmly attached for weeks. I feel like I am constantly riding a rodeo. But I am hanging on and I hope I can report massive success soon.

      Plus the horrors of a catalogue of disasters in the hope none of you end up naively trusting people know what they are doing, like I did. Sadly round here there seems to be a lack of competence or ownership.

      Hugging the back of this "bull" like my life depends on it (cos it does...)
      Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

      Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

      Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

      Comment


        Hugs to you two and everyone who could do with one. I was feeling particularly down with struggling with not feeling well and then my daughter and granddaughter couldnโ€™t visit because of sickness and diarrhoea. My favourite district nurse came and gave me such a lovely hug 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 TinyLady View Post
          Hugging the back of this "bull" like my life depends on it (cos it does...)
          You're spot on Tiny - I wish with all my heart that you get everything you need and deserve ๐Ÿ’–
          โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

          โ€‹

          Comment


            Originally posted by Heather R View Post
            My favourite district nurse came and gave me such a lovely hug
            That's a great medicine Heather ๐Ÿ’–
            โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

            โ€‹

            Comment


              Heather R - can I ask what the district nurse does (apart from good hugs).

              Mine just sits down asks why she is there (I had no idea she was even coming) so I don't know. So then I ask her a couple of things and she says she can't help with them (constipation and feet falling off wheelchair foot plates) so what is the point of her visit? What can/ do they help with?
              Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

              Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

              Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

              Comment


                TinyLady That sounds very strange. A district nurse comes to me every Friday to move my peg tube in and out and round about, to stop it sticking (what do they call it? Advance and rotate), and check for any problems. They came 3xday to give me eye drops when I had a cataract operation. How frustrating for you when you are in need of so much help, that she came and canโ€™t help with anything!! X
                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 TinyLady View Post
                  ... she says she can't help with them (constipation and feet falling off wheelchair foot plates) so what is the point of her visit?
                  If that were my nurse Tiny, she could help with the constipation by recommending different laxatives, inserting suppositories and even doing enemas (I never had one but was 'threatened' with one, thankfully I went!!)

                  She probably wouldn't have done anything about the footplates, but would have told my OT - they all sit near each other in the office.

                  When I had a cut on my PEG site, she came 3x week to check it and brought me dressings. She is also responsible for making sure I stay free of pressure sores. xx
                  โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  โ€‹

                  Comment


                    Morning everyone. I'm not sure what community nurse can do. I usually get told that they dont know anything about peg/mnd. When I asked if nurse could take blood/urine - only if she wants to!

                    Stephen had his NHS health check. They sent results to my daughter stating he is at risk of heart attack in next 10 years and could be prescribed statins.

                    ๐Ÿ™„ I could do with a hug. Xxx
                    when i can think of something profound i will update this.

                    Comment


                      Hugs everyone 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 denise View Post
                        I usually get told that they dont know anything about peg/mnd.
                        For many things it is irrelevant if community nurses have experience in MND and PEG tubes - skin integrity, wound care, pressure sores, constipation, catheter management etc. etc. follow the same pathways whether on a person with an MND or on a person without MND.

                        In some areas maybe it's a Dietitian who looks after PEGs or, if a person has a food pump, often the pump provider provides care of the PEG tube too.

                        It sounds as if some nurses are very quick to use Manuel's famous 'I know nothing...' as an excuse ๐Ÿ˜Ÿ but, I have to say Denise, that Stephen's nurse actually said "only if I want to", is a new low. ๐Ÿ˜ฒ๐Ÿ˜ก

                        So please have a hug with a cuppa and 6 chocolate digestives ๐Ÿค—๐Ÿค—๐Ÿ˜˜๐Ÿ˜˜

                        (I'm not even going to mention the letter...)
                        โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                        โ€‹

                        Comment


                          Hugs to all ๐Ÿค—๐Ÿค— after reading all those posts from yesterday you all certainly need them.

                          TinyLady I agree with Ellie the OT should sort out the feet falling off the footplates. Ring the wheelchair service that supplied your wheelchair, they should suggest a solution.
                          Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive ๐Ÿ˜บ.

                          Comment


                            Sending hugs, I have certainly made good use of the ones from you all - and the advice.

                            I am going to get someone to contact wheelchair services. I have an appointment in a few weeks. Trouble is they never have what I need when I go and have been waiting for back support foam as chair base too deep, much larger control knob as mine is causing pain, pressure cushion, adjustments as I fall down back of wheelchair, service as it is groaning and squeaking terribly plus switch on of lift functionality... only been waiting 6 weeks so far. In the meantime we are tying my foot to the foot plates ๐Ÿคฃ

                            Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                            Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                            Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

                            Comment


                              Sending hugs from Italy, so they probably include a crafty bum pinch too
                              Hi, I'm Eddie.
                              Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
                              Still walking and talking, and wondering what the future will bring.

                              Comment


                                Morning huggable people. Yes I'm on coffee and digestive biscuits now.
                                ๐Ÿ’•๐Ÿ˜˜๐Ÿค—๐Ÿ’—
                                when i can think of something profound i will update this.

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