Announcement

Collapse
No announcement yet.

Early weekend?

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

    Early weekend?

    Very quiet again today methinks 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

    #2
    Hatches are battened down

    Take care
    Donna

    Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020.

    Comment


      #3
      I've been quiet a while. Been 3 weeks in the hospice and really desperate to get home. I've managed to gain a bit of weight which is fantastic news.
      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


        #4
        Originally posted by TinyLady View Post
        I've managed to gain a bit of weight which is fantastic news.
        That's a good result πŸ‘πŸ‘

        Has any progress been made on getting you home? 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


          #5
          Ellie - I have had a needs assessment at last and an OT has had a look at my house. Got a powerchair but no ramps...

          We have decided to hire a stairlift for now so I can still get upstairs while we fundraise and look at lift options.

          I think council might help us pay for a wetroom. But still a long way off being ready to start that. However now I am rested and got some fat reserves I am far less wobbly on legs with walking stick. So I think I am going to ask to go home next week.

          I hate wasting time away from my family and friends when time is so precious.

          All my tests came back OK too - I think all my swimming must have helped with breathing. So PEG postponed for now too, I need time to get some things in motion.

          Only downside is I've noticed changes creeping into my final limb... the right hand and shoulder. Was hoping it was just fatigue but weirdly follows the same pattern the left did.

          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


            #6
            Originally posted by TinyLady View Post
            I think I am going to ask to go home next week.
            Oh, that's fab - will the stair lift be in before you get home?

            Originally posted by TinyLady View Post
            Only downside is I've noticed changes creeping into my final limb... the right hand and shoulder. Was hoping it was just fatigue but weirdly follows the same pattern the left did.
            Sorry to hear that Tiny, there are no words of comfort, it just sucks. 😟

            Take advantage of everything in there whilst you can, including eating to put on another kilo πŸ˜‰ 😘😘
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

            ​

            Comment


              #7
              Ellie - I had to laugh about your comment about each kilo... strange how that gain feels like a success where once it would have been bad news... I'm eating enough to live off for at least another 6 months 🀣

              Hopefully stairlist roughly when I get home (assuming they agree to my demands to go home 🀞).
              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


                #8
                You have been missed.
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

                Comment


                  #9
                  - I'm not sure why I came on here so much less. Think I was trying to adjust to so much going on and the shock of diagnosis. Good to know you didn't forget me πŸ˜†πŸ™‚πŸ˜˜
                  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


                    #10
                    Originally posted by TinyLady View Post
                    - I'm not sure why I came on here so much less. Think I was trying to adjust to so much going on and the shock of diagnosis. Good to know you didn't forget me πŸ˜†πŸ™‚πŸ˜˜
                    I'm glad to hear you're getting all the support you need...

                    We'd never forget youπŸ€—πŸ˜˜
                    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


                      #11
                      I've had the company of a badger every evening here in the hospice. I was putting peanuts outside for squirrels and birds and then there he was outside the window one evening! He likes peanuts and custard cream biscuits...
                      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


                        #12
                        TinyLady that sounds amazing πŸ€—
                        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