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I’m scared stiff

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    I’m scared stiff

    After 4 years and two months with this horrible disease I’m still just about transferring with my walker to wheelchair and getting into bed by holding on to things. But these aren’t sustainable and I’m scared stiff.

    Council people are coming tomorrow afternoon to measure up for ceiling hoists but no guarantee that that they can do them in our flat. I certainly hope so. We’ve got a Return platform for if I can weight bare but not walk. Not used yet and it’ll be hard for Steve and for me.

    My SLT is coming tomorrow morning about my problems eating and swallowing. She must not know that I’ve got a PEG booked in for in two weeks.

    Fairfield Hospital Orthotic Department have been in touch to confirm that my shoes are ready. Appointment on 3rd to fit.

    I’m working hard breath stacking to keep my lungs as strong as I can but I expect to come home from having my PEG with breathing support (a NIV).

    My catheter is eventually being sorted out on this Wednesday morning. I hope that the new one doesn’t leak like the two others. I’ve had to wear incontinence pants which is awful.

    Rant over. I hope that my post hasn’t put anybody on a downer. Lynne xx
    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.

    #2
    Lynne K sorry you've had such a difficult time lately. The issues with the catheter alone must be distressing...especially as it was done with a view to alleviate problems. You are bound to feel low.

    Sounds like you've organised support for it all this week....so hang tough & you're sure to see improvements....easy for me to say....but said from a place of caring 🙏😘😘
    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.​​​​​​

    Comment


      #3
      I think we all experience fear. I'm only 8 months post diagnosis but I know I'm more over the 2 year mark re symptoms.

      I think you have most things covered. If they can't do the hoists etc then hopefully manual hoists will suffice.

      I've had stop worrying about the future because it just totally burns me out to a point I just have no go in me. X
      Diagnosed May 2021 bulbar onset als.

      Comment


        #4
        LindaB thanks Linda xx
        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.

        Comment


          #5
          Hi Lynne

          It's horrible having a lot of things that need sorting and so many people arriving. I hope the catheter has a positive outcome. That's horrible when it doesn't go as planned.

          Stephen is 4 years in, if not more. Housing officer coming next week to look at what alterations can be made to our flat. Not sure if I'm happy or sad. If alterations take too long I really don't think I will cope with that ontop of everything else.

          Then again when it goes quiet and nothing is happening I find myself thinking 'where is everyone, why is nothing happening?' 🤔
          when i can think of something profound i will update this.

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            #6
            denise same here, been waiting for adaptions to our flat for about 4 months. I contacted the Council and they said that I’m next on their priority list but they’re still working on one and only do one at a time xx
            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.

            Comment


              #7
              Your in my prayers 🙏
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

              Comment


                #8
                Oh my days Lynne K . Im not surprised you feel scared with such a lot going on at once.

                It must be so hard relying on so many professionals at the same time. I find i need to deal with one problem at a time otherwise I feel overwhelmed but for you it's all come at once.

                A word about ceiling tracks and I am no expert. We were told if there was concrete between the floors then it will be viable. 🤷‍♀️

                Hugs and strength to you,
                Love Debbie x😘🤗

                Comment


                  #9
                  Oh Lynne, I can understand why you're scared stiff...

                  ... But, look at where you are - 4yrs and only now you need interventions. You PEG procedure is around the corner, and your mobility has decreased, so your security blanket has been whipped from under your feet. I think that's reasonable ground to be feeling scared stiff 😟

                  Originally posted by Lynne K View Post
                  I’m still just about transferring with my walker to wheelchair and getting into bed by holding on to things. But these aren’t sustainable and I’m scared stiff.
                  Did you not try the hoist with the proper sling arrangement?

                  Originally posted by Lynne K View Post
                  I expect to come home from having my PEG with breathing support (a NIV).
                  You posted less than 2 weeks ago that your respiratory appointment went well, I think NIV would have been mentioned then if there was an iminent need for its use.

                  Sending you a big hug 🤗🤗🤗😘
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  Comment


                    #10
                    Ellie no my OT didn’t bring the correct sling and we’re waiting for the standing hoist to be collected because it’s too big for our tiny flat.

                    The Council are due tomorrow morning to measure up for ceiling hoists but it’ll take a while for them to install if they agree to install them.

                    The care company that I want will only work with ceiling hoists Home Instead so I certainly have my fingers crossed.

                    We have a Return platform that hasn’t been used yet because it dragged on our thick carpets. But Steve put my chair and wheelchair next to each other so not far to move compared to where my chair was.

                    Thanks, Lynne xx
                    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.

                    Comment


                      #11
                      Originally posted by shelly21 View Post
                      I think we all experience fear. I'm only 8 months post diagnosis but I know I'm more over the 2 year mark re symptoms.

                      I think you have most things covered. If they can't do the hoists etc then hopefully manual hoists will suffice.

                      I've had stop worrying about the future because it just totally burns me out to a point I just have no go in me. X
                      Shelly manual hoists are too big for our tiny flat. The only other option is ‘stantions’ I think they’re called xx
                      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.

                      Comment


                        #12
                        Lynne K yes it is all overwhelming isn’t it. My husband is in his fifth year with MND and we are now in the process of requiring more input from Occupational therapy. I have to get dismantle a lovely bed tomorrow as he requires a profiling bed as I’m having difficulty with getting him out of bed. We are in the process of waiting for a recliner/riser chair. We tried a portable hoist to get him off chairs etc but due to no use in his hands and arms was unable to hold on to the handle bars, so I am currently using a belt that fits around his hips enabling a better grip for me and helps with my back. I hope you are able to sort all your difficulties out. Thinking of you.xx

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                          #13
                          Piglet thanks. At least I was able to do the usual nightly routine just. I did my teeth, took off my clothes (which were loose, tighter ones Steve would have to taken off me), Steve helped with bed bras then I put on my silk pjs and slippers xx
                          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.

                          Comment


                            #14
                            Silk pj's, get you! 😉😜😁😘xx
                            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                            Comment


                              #15
                              Lynne K sending love and hugs. Sounds so hard, hang on in there. I don’t have those mobility issues but they sound a nightmare, do hope you can get good help soon xx
                              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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