Announcement

Collapse
No announcement yet.

Early Bird Club

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Hugs denise
    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


      denise Does the hospital not allow any visitors or is Stephen somehow different πŸ€”

      Much love πŸ€—πŸ€—πŸ˜˜πŸ˜˜
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

      ​

      Comment


        Why does he need to have a room in order for you to visit him? The hospital are allowing visitors, my neighbour is in Derriford and her husband is going in daily to visit. there must be something they can sort out for you to see him. Hopefully now Denise they can find him somewhere suitable and caring and which can cater for all that he needs in a safe and nice environment for him. Thinking of you. You could pass some time making him roll ups in preparation for the care home garden?!!! have some much needed rest Denise and look after yourself. xx
        Diagnosed June 2022. Confirmed MND which is currently PLS. Limb onset.

        Comment


          Oh denise.. how awful.

          I just hope Stephen gets the care he needs and you are able to get some rest.

          Sending you thoughts and love xxxπŸ€—πŸ˜˜β€

          Comment


            denise I'm so sorry things have escalated so quickly. Its awful you can't visit.

            Its a bitter edged sword for you. I just hope they find a lovely home soon. Xxx
            Diagnosed May 2021 bulbar onset als.

            Comment


              denise ah sorry to hear about Stephen. Hope you are coping without him. I know it’s been hard for you recently looking after Stephen but at least he’s in hospital now and everything will be sorted from there. It will take some time to adjust with him not being with you but hopefully your looking after yourself and having a breather. Hope they find somewhere suitable for him. Take care of yourself and keep us posted 😘 xx

              Comment


                Hes on a ward so I shall phone later. I fell asleep about 6pm and went to bed. I feel exhausted I don't know where the tiredness has come from. I feel lost. Here I am in the wee small hours. Lovely full moon.
                when i can think of something profound i will update this.

                Comment


                  Just catching up denise Sending hugs xx

                  Comment


                    Thanks Olivia H. Xx
                    when i can think of something profound i will update this.

                    Comment


                      Hiya denise Hope you got some rest.
                      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


                        WheelsOfSteel not to bad. I was so tired. I've found Stephen in the hospital, they moved him 2am from one ward to another but gather he didn't have a good night because of a very disruptive patient on the ward. Which has me worrying once again. Tried to talk to him on the phone but he's not good with the phone. Not sure that I feel better or worse for calling.
                        😞
                        when i can think of something profound i will update this.

                        Comment


                          denise try and rest as much as you can, give your body a chance to recharge after your very difficult last few months.

                          Not easy to wind down when you have constantly been on the go I know. Thinking of you xxx
                          Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicated with eye gaze

                          Sense of humour intact throughout.

                          Sadly passed away peacefully 2/9/22

                          Comment


                            Just bracing myself for this hot weather, but thoughts with you all in our different challenges xx
                            Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

                            Comment


                              Ahoy mateys 😘😘

                              I had a rather busy, but very productive day with an in-person2hr wheelchair seating review πŸ‘πŸ‘

                              Then out to catch some rays but πŸ₯΅πŸ₯΅ = one wet Sweaty Betty.
                              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                              ​

                              Comment


                                Originally posted by Ellie View Post
                                Ahoy mateys 😘😘

                                I had a rather busy, but very productive day with an in-person2hr wheelchair seating review πŸ‘πŸ‘

                                Then out to catch some rays but πŸ₯΅πŸ₯΅ = one wet Sweaty Betty.
                                Make your mind up. Are you Ellie, Elsie or Betty 🀣🀣😁 I’m easily confused 😘

                                Comment

                                Working...
                                X