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Stiffness and dealing with stuff

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    Stiffness and dealing with stuff

    Hi everyone the journey continues as it does for us all ! I wish we could all say it's enjoyable ..it isn't... So we're am I at now stiffness and fatigue are now my enemy also twitching in the cheeks ( does feel like my face has tightened) visited consultant couple of weeks ago and increased baclofen plus zapain given as l suffer from arthritis to add to my mix breathing not too bad getting on with niv and been referred to Hospice which to me is sort of a big step don't know why just is. They said they offered massage only hope it's not like my last which was akin to a Turkish Massage he laughed when l told him this ! Each day a challenge as is trying to stay positive with this crappy dreadful illness. Love and light to you all x

    #2
    Derbyram21 sounds like you are just trying to deal with things a step at a time. I know what you mean when certain things feel "big" to you. Yet they are often delivered in the same way as smaller things.

    I must confess when you said about your face twitching I remembered some awful thing advertised years ago that made your face twitch to "tone it up" and make you look younger... we can live in hope I suppose....
    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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      #3
      Derbyram21 Welcome to the Baclofen Club 😏 hope it works wonders on your muscle tone

      It's good to hear that your breathing hasn't worsened much, a positive piece of news in amongst the not so good...

      I remember being told that I was to be referred to a hospice: a hospice 😲 to me that meant 'we expect you die next month' but, had I listened to my GP, he was saying the opposite. I attended Day Hospice (very much pre-Covid) and had physio, OT, nursing and, yes, lovely massages 👍👍 They also have a mission to enhance the lives of those with life limiting conditions, i.e. us, although in these Covid times, some services have been unfortunately severely curtailed 😟

      I am in a hospice atm, for respite, and now there's a Dietitian and SALT on the MDT.

      And... massage booked for Tuesday, whoop whoop 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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        #4
        Ellie enjoy being pampered on respite. You deserve it xx

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          #5
          Ellie respite sounds good. I'd quite like respite from myself 🤣 how long are you staying for?
          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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            #6
            TinyLady 2 weeks 👍👍😘
            ​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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              #7
              I hope you are content there and well looked after Ellie 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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                #8
                Originally posted by TinyLady View Post
                I hope you are content there and well looked after
                Thanks Tiny - yes and yes. 😘
                ​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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                  #9
                  Thankyou as always everyone on here lovely and kind. I will let you all know how I go . So much support on here and knowledge !! Xx

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                    #10
                    We found the hospice great, we were referred very early on and they provided great support when all my hubby wanted to think about was going to Dignitas. They certainly help you to enjoy living. He loves going there for one afternoon a week and its great to see him laughing and enjoying the visits. We would have been very lost without our wonderful hospice.
                    Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicates with eye gaze.

                    Respiratory and blood gases still within normal range.

                    No speech but sense of humour still fully intact.

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                      #11
                      MMG our local hospice doesn’t offer day respite, they used too until covid.🙁 Glad yours does though 😀xx

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                        #12
                        When I first got invited to my local hospice I found the thought all very daunting… how wrong was I. The staff were wonderful and there was lots of laughter. Since lockdown I haven’t been back to the day centre or any other activities but I loved going when I did. I miss the reflexology 😜

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                          #13
                          I gather Stephen is too fit to go but think I should 😐
                          when i can think of something profound i will update this.

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                            #14
                            denise I'm fit and I go the hospice. I've been going for a year now. Its nice as there are group activities and they can offer support etc x
                            Diagnosed May 2021 bulbar onset als.

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                              #15
                              I've asked about Stephen going but they only have 8 beds. I've been told because of his ftd the hospice should visit him at home but we just seem to get the big e. I felt before he should have contact with them but it would seem not. Very upsetting.
                              when i can think of something profound i will update this.

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