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    I haven't been around much as my clumsy fingers make everything frustrating to say the least. I'm thinking about you just not interacting. Missing you. πŸ˜πŸ˜œπŸ™„πŸ€—xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

    #2
    I'm missing you. It's not the same without you. πŸ˜˜πŸ€—πŸ˜˜
    when i can think of something profound i will update this.

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      #3
      I do have the same problems especially on my phone so I sympathise. On my phone I use the MNDA pen with the soft tip on the end. It’s a bit difficult to hold the pen but it’s fatter so I can do it. Just a thought. Praying for you and all of us.
      Bulbar ALS diagnosed September 2021, no speech, PEG fed, using ipad with Predictable to communicate, taking each day as it comes

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        #4
        Miss you also. I guessed you were in training with your new device. X
        Diagnosed May 2021 bulbar onset als.

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          #5
          Have the same clumsy fingers problem which makes posting a pain.

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            #6
            Same here hands have gotten much worse that’s the reason I don’t come on here much anymore 😒 x
            Janette x

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              #7
              For anyone having difficulty accessing technology, please please please know that there are solutions available - ask your SLT or OT for a referral to an Assistive Technology service. 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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                #8
                Ellie ive not heard off my SLT for over a year, thanks I’ll chase this up today πŸ‘ xx
                Janette x

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                  #9
                  matthew55 I thought that might be the issue, I'm sorry. It's your ability to communicate with your carers which would be of most concern, although you're missed here lots & lots.

                  You did say that you could get eye gaze so, if that's what you'd like to pursue, do get in touch with your AT contact. 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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                    #10
                    Stephen's hand are practically useless but they look poodgy and reddish. Anyone else the same? His feet and legs below the knee look similar. Spoke to community nurse yesterday but she wasnt sure so shes getting us down for a multi disciplinary. πŸ€”
                    when i can think of something profound i will update this.

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                      #11
                      Miss not hearing from you so much Matthew, and do sympathise. My one finger typing on my iPhone is getting more hit and miss, thank goodness for predictive text. Xx
                      Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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                        #12
                        Originally posted by denise View Post
                        Stephen's hand are practically useless but they look poodgy and reddish. Anyone else the same? His feet and legs below the knee look similar.
                        Obviously the nurse wasn't overly concerned about it - did she mention fluid retention? It's pretty common in limbs and joints which aren't exactly mobile or used much - my hands and knees would get like that if carers didn't do range of motion exercises. 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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                          #13
                          Originally posted by denise View Post
                          Stephen's hand are practically useless but they look poodgy and reddish. Anyone else the same? His feet and legs below the knee look similar. Spoke to community nurse yesterday but she wasnt sure so shes getting us down for a multi disciplinary. πŸ€”
                          Hubby is the same, was referred to lymphodaema service, whilst waiting for that to come through, OT have shown us some massage techniques which help massively. His feet are also very cold due to poor circulation and the massage helps with this too. The oil also helps with dry skin so win win.
                          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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                            #14
                            denise

                            Thomas' feet get really red and his hands used to get swollen. It is the immobility. as long as when you press the skin it blanches white, then returns to normal. The circulation is functioning but it is still good to mention to the medical team.

                            Donna

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

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                              #15
                              matthew55 - you are missed but I do think if anyone understands how challenging posting can be then we do. Just good to hear from you when you do pop up 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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