Announcement

Collapse
No announcement yet.

Potential new start

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

    Potential new start

    My lovely OT said she was checking my bungalow yesterday and I hope to hear back from her today. Plus she has referred me for a power wheelchair. Truly a Glorious day. 😁xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

    #2
    Hey Matt!

    That's fantastic - I hope you hear from her soon, I can almost picture you whizzing around in a brand new chair x
    Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

    Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

    Comment


      #3
      That’s wonderful Mathew, Lynne x
      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


        #4
        Well done. Looking forward to hearing more ☺️
        when i can think of something profound i will update this.

        Comment


          #5
          Be careful what you wish for. It's unfortunately not suitable.😞xx
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

          Comment


            #6
            Oh Matthew 😦 something else might turn up. 😚
            when i can think of something profound i will update this.

            Comment


              #7
              Originally posted by matthew55 View Post
              Be careful what you wish for. It's unfortunately not suitable.😞xx
              Hi Matthew,

              Did they give you a reason?
              I’m going to do this even if it kills me!

              Comment


                #8
                That's a real shame Matthew, just as you start to put things into your mind
                Husband Albert diagnosed PMA Feb 21

                Comment


                  #9
                  No wheelchair access and tiny bathroom
                  Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                  Comment


                    #10
                    Originally posted by matthew55 View Post
                    Be careful what you wish for. It's unfortunately not suitable.😞xx
                    Oh dear that’s a big disappointment isn’t it Mathew. Was it too small? Before we accepted this 2 bedroomed flat we looked for a bungalow. All of them in our area were tiny. This flat is bigger than all were but I started have problems getting through doors with my big powered wheelchair. Good luck with something suitable coming along quickly. Love Lynne x
                    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 matthew55 View Post
                      No wheelchair access and tiny bathroom
                      🤨 You'd have hoped the OT would have checked out the basics before mentioning the house and getting your hopes up, that was so unfair of her... She should reccy it first, then tell you.

                      Also Matthew, make sure you're not being overlooked on the basis of your age - you'll find some properties are listed for "preferably over 65yrs", make it clear that you should be considered for all properties.

                      Hugs for you 🤗🤗🤗 xx
                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user
                      .

                      Comment


                        #12
                        Yes Mathew why didn't they know that the door entry was too small - in a lot of cases this can be rectified, and I also found it a big help having the door swung the other way so it doesn't open into the bathroom but outwards - makes a hell of a difference - but I suppose you need a decent width hallway to be able to do it,
                        Good luck
                        Husband Albert diagnosed PMA Feb 21

                        Comment


                          #13
                          Oh Matthew.. Im so sorry the bungalow isn't suitable for you. You sounded so positive and upbeat in your earlier message .

                          I don't know why I'm surprised anymore but I can't believe they didn't check it before they told you....its a straightforward job for someone to do so.

                          I really hope they make you a priority and find a suitable place soon.

                          Hugs to you,
                          Love Debbie x

                          Comment


                            #14
                            Sorry to hear that Matthew. I used to work with clients who needed specialist housing and I remember giving a thorough list of their needs, only to be offered something wholly unsuitable😑 Is this a social housing agency? Is private renting an option? Or a modern ground floor flat with the correct access and space? X

                            Comment


                              #15
                              matthew55 that's horrible to have your hopes raised and then dashed. Can only imagine the frustration...just wish ppl would do their jobs properly! I hope you get a suitable offer soon✊
                              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

                              Working...
                              X
                              👍