Announcement

Collapse
No announcement yet.

The long waiting game.

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

    #16
    Just think what it would be like without a council to help. Scary!πŸ€”πŸ˜πŸ€—πŸ˜xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

    Comment


      #17
      Originally posted by matthew55 View Post
      Just think what it would be like without a council to help.
      America...

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

      ​

      Comment


        #18
        HI

        Lynne K and Petey

        Thanks

        It has been a very long 14 months

        The council lady was out today to fill form for the wheelchair accessible door. It will take some time but process started.

        Council will pay as on the Universal Credit.

        They are UC, charging us 60 quid for the glorified cupboard which is the second bedroom.

        I will gird my loins for that fight next week as OT said we had to have it to future proof.

        I will not get in a rant about the bedroom tax in England were there are little to no one bed accessible places (FUME)


        All the rooms are rectangular so not the best.

        We can't get the beds together as I thought

        But thank goodness for housing assocciations but we had to wait to go through nearly all savings etc

        Plus move to a less populated area of the country.

        The shower is brilliant but the water does get worringly close to the door.

        The heating is great but waiting for first bill plus actually cooking with literal gas.

        All in all positive but I realise that I put all my effort in the last 14 months to get us a wheelchair friendly place.

        Now we have it and all my get up and go, has got up and went.

        Sitting surrounded by boxes and we will be up a creek if someone actually needs to sleep in the second bedroom, as full of boxes of our accumulative 100 years on planet earth.

        But celebrating 14 months diagnosed, will see what the consultant says in October, he is not exactly a ray of sunshine.

        We know it is incurable, gets worse but looking at the bright side is not denial.

        Have a great weekend

        Comment


          #19
          Petey

          Husband can transfer with my help. Lost safe walking in January but we think he got a chill from the house move a week before Christmas
          Which knocked his health.

          We believe he has had this since early 2019 at least, only diagnosed in July 2020

          The consultant doesn't class it as mobile because he can't get up on his own.

          It is a balance thing and as his arms don't work at all. So we conserve energy and prevent falls by using the wheelchair.

          When we asked last year about help to keep him on his feet longer ie physio

          we were told not to bother and no assistance was given

          Basically told to get used to the wheelchair, husband was not pleased

          he can manovre the wheelchair with his feet and propel the riser chair across the room if he is not careful.


          There are wooden humps between the rooms, OT has applied to get them removed as have to physically lift hubs and wheelchair over.

          Enjoy your bungalow



          Comment


            #20
            Life is a pile of then we die.
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

            Comment


              #21
              Hi. Whilst waiting 5months for the MND neuro I was fast tracked for emg & mri. That helps the neuro when you do eventually see them.fast trackk should be two weeks. I do really understand as I waited 5months. You are at least planning for your physical changes which is what I also did. I also had been blood tests done for other mimics such as hsp. Maybe explain that if these tests are done prior to your neuro appointment it would prevent a delay in a diagnosis.
              Diagnosed May 2021 bulbar onset als.

              Comment


                #22
                One of the really great things is that they have to dismiss everything before finally getting to MND/ASL. I was very lucky that my ENT endoscopy showed my voice box was half dead. No brainer! πŸ˜‰πŸ˜πŸ€—πŸ˜xx
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

                Comment

                Working...
                X