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    #31
    TinyLady I’m glad you had a positive outcome, not before time by the sound of things. Xx
    Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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      #32
      Personally I love a good ramble, even if I fall over a lot. 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

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        #33
        TinyLady glad to hear you're getting support now...it's understandable you'll feel overwhelmed. Whatever anyone says ultimately you choose the support you're prepared to accept....you're your own expert. Take careπŸ€—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.​​​​​​

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          #34
          At last things sound so much better. Let's hope things improve for you. Xxxx
          when i can think of something profound i will update this.

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            #35
            TinyLady I'm so sorry all this is happening but maybe things would move quicker if you had a stay in the hospice. I really understand the wanting to be at home but I worry re you being alone re your partner working and children at school.

            At the hospice you could just take time to rest and be cared for until you mentally feel stronger. Then hopefully the care package could be implemented.

            X
            Diagnosed May 2021 bulbar onset als.

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              #36
              Originally posted by matthew55 View Post
              Personally I love a good ramble, even if I fall over a lot. πŸπŸ˜˜πŸ˜πŸ‘€xx
              I've no idea how to access more smileys than the paltry amount visible but I wanted a good ROTFL smiley for that one, it did make me laugh! (And no pun intended!)

              TinyLady Hi, it's good to read that both the physio and the doctor were pro-active and helpful - and genuinely interested in YOU. Did the physio suggest any kind of portable aids that might help in the short-term or is that not an option? (Feel free not to answer if you don't want to).

              It's a big decision to make - perhaps you could talk it over with them again once you've had time to process the idea as I'm sure you must have more questions.

              Best wishes xx
              Husband diagnosed October 2020 with ALS. Started with foot-drop and weak grip/visible wasting in right hand. NIV and powerchair user.

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                #37
                Betty May - I know matthew55 made me laugh with that comment. Love this forum and the fact we don't need to take ourselves too seriously!

                I have agreed to go in. I'm aware that I am not safe, I need to find out what is what - I've had this a while and so far just been getting on with it oblivious, so if this speeds everything up, then I need to accept the help. I'm so tired of struggling.

                The physio looked at a few options, but with a combination of one arm and two legs not cooperating, plus fatigue after a few steps, I think the conclusion was not to push it. But once in there maybe we can tweak things and come up with a plan.

                I keep nearly falling backwards which the worst thing, rather than tripping forwards. Very odd.
                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.

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                  #38
                  TinyLady When are you going in?

                  Originally posted by TinyLady View Post
                  I keep nearly falling backwards which the worst thing, rather than tripping forwards. Very odd.
                  Falling backwards is usually how we fall, rather than forward, Drama Queens and Kings that we are 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.

                  ​

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                    #39
                    Ellie - as soon as they have a bed. They said hopefully early next week. Shame because my birthday is next week and it would have been nice to have partied all night 🀣

                    Oh, interesting it is fairly standard to fall backwards! I thought I was strange and being a bit dramatic. Sounds like there is maybe a good reason then... other than attention seeking 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.

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                      #40
                      Originally posted by TinyLady View Post
                      Sounds like there is maybe a good reason then...
                      Yep, it's called retropulsion and is caused by damage to nerves. xx
                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                      ​

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                        #41
                        TinyLady Glad positive things are happening for you. We have to make many difficult decisions on this MND journey, many we would rather not have to make. Having a supportive & experienced team will help you when making these decision. Hopefully going in for a stay will give you a well earned rest, physically and emotionally, both of which can be exhausting. Sending hugs πŸ€—
                        Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive 😺.

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                          #42
                          Ellie - oooh a word to Google! Thanks πŸ™‚

                          Tabbycat - yes, I think the benefits outweigh the missing being at home and with my family. Plus the "brave face" will finally get a rest xx
                          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.

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