Announcement

Collapse
No announcement yet.

Mute reality check

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

    #16
    Ellie that’s good Ellie xx
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

    I'm staying positive and taking each day as it comes.

    Comment


      #17
      It's shocks me how little understanding and sympathy people have for someone who has difficulty with communicating. Matthew and Ellie you have greater problems to me, but I find not being able to communicate easily is hugely upsetting, especially if you are at the end of your tether with everything else, and you are on your own with no-one to support you or speak for you. I have just had my 3 hour DST meeting, which was a huge strain trying to speak so that they could understand. If I have a problem and it is only sorted by phone, I am usually so stressed I am pretty indecipherable, and I tend to be weepy with frustration on top. I think I was put low category for communication, they managed to understand me when I was sitting in my own chair in my own house, not out of breath or trying to stand or whatever. And anyway, they said, I have an iPad so I just need to get used to that. My hands are not good but better than Matthew's and typing is easier when not under stress. You may think I'm being pathetic finding it so difficult, but I just do, so hugely sympathise with Matthew and Ellie. The hardest and most upsetting thing I find with mnd, more than difficulty breathing which they gave me severe for. xx
      Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

      Comment


        #18
        Originally posted by Heather R View Post
        You may think I'm being pathetic finding it so difficult, but I just do
        Oh my lovely lady, not one person would ever think anything of the sorts Heather 😟😘😘😘🤗🤗🤗

        I've often said that I'd 'happily' live with all my disabilities but just give me back my speech - for me, it is by far the most difficult aspect of my ALS. Talking is the very essence of being human, it's such a fundamental part of life, and not being able to talk is truly awful but I am truly grateful that communication is still possible with technology....

        I'm sorry your assessment was so long - 3hrs is way too long - have these people no empathy for those they are interviewing who, by the very fact they are applying for CHC in the first place, are not full of health and energy 🤯🤯 It sounds pretty intimidating, tbh.

        Sending you extra love after your traumatic afternoon 🤗🤗🤗🤗💖


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

        Comment


          #19
          Heather,

          You are not being pathetic. I can totally understand. My speech has gone in the last few weeks and it makes life impossibly hard. I could not have sat through a 3 hour meeting and, as Ellie says, have they no empathy. I panic now if my IPad is not near and have to rely on friends to ring the GP for me. I registered online with the GP but they never reply to messages and suggest you ring instead. I realise what it means to have no voice and that is the first thing I lost to mnd. People do not wait for you to type a reply, you are excluded from conversations or talked to like you are deaf or stupid. Or they look over your shoulder to see what you are typing. It takes away who you are. I feel I am not the same person anymore. There is not always an email alternative for banking or even Adult Social Care in my county. I use a notepad at times and the doctors receptionist walked off with it with me gesticulating I wanted it back to write something down. I have what I want to say in my head but can't get it across before the conversation moves on. I gave up with my friends before Christmas as I kept typing things and deleting them as they chatted between the two of them. Ironic in that I used to be the chatty one.

          Sending hugs 🤗🤗 x
          Diagnosed 3rd November 2021 Bulbar Onset

          Comment


            #20
            Heather and Gill: I know the feeling. I got really upset but didn’t show it when I could keep up with a conversation about eighteen months ago (all family on Steve’s side). I could talk then but quietly and they didn’t hear me in the noise around our table in a pub where we’d had a meal. It was a conversation about politics and I had a lot to contribute but didn’t get the opportunity. Xx
            Last edited by Lynne K; 29 December 2021, 21:52.
            ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

            I'm staying positive and taking each day as it comes.

            Comment


              #21
              Heather R A 3hr assessment is such a long time especially struggling to communicate...I hope you were offered support from an advocate or social worker.
              ​​​​​​
              Losing our voice is devastating...in so many ways. xx
              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


                #22
                Very important to make life uncomplicated as possible for carers or else debacle's like Ellie's will occur. Even the great Stephen Hawking lost his voice box in a carer accident.

                There is always great danger when unable to communicate. Respect to dogs!
                Copyright Graham

                Comment


                  #23
                  Thanks Ellie, Gill, Linda and Lynne
                  And apologies to Matthew for invading your thread when you were obviously able to see the matter much more calmly than I was yesterday xx
                  Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

                  Comment


                    #24
                    My heart is bleeding for you all. I have ordered an electronic typewriter in the hope that I can write instructions for for my carers. A snip at £250 💷📝😁😍xx
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                    Comment


                      #25
                      Ellie ,
                      Woke up with an even weaker voice this morning so trying out predictable 6 just in case this is the end of speaking .
                      I read how hard it is to communicate without a voice and I can only work out how to type on predictable.
                      i Have the app on iPad and mobile phone.
                      I guess for now I need to use either while I can.The iPad feels heavy in my weaker right hand.Ivan still use the keyboard with both hands.

                      How do you manage on a phone call?using predictable

                      Did you find the transition to using an app difficult practically and emotionally. .I am not IT savvy but do have the manual so trying to familiarise myself with using predictable.
                      Think the time is almost here that I won’t be able to speak…such a loss and feel a bit anxious .
                      Best wishes
                      Mary

                      Comment


                        #26
                        Ellie I would certainly stress too.It’s bad enough when I can speak and shout out…my tube is caught up etc.
                        Feeling vulnerable this morning
                        best wishes
                        Mary x

                        Comment


                          #27
                          Mary C good luck with learning Predictable 6. I’ve got it on my iPad and iPhone too. The North West Adaptive Technologies gave me a headset and set up an app on my iPad and phone so that I can move the curser
                          and turns pages. I haven’t been using it for because its pathetically slow and my dodgy fingers are quicker. I still have some voice but like you not for long.

                          About phone calls: I suggested to Mathew holding his tablet with predictable close to his phone, type to ask whoever to be patient while you type etc but he said that he’s tried it but people aren’t patient enough and hang up. Steve answers my calls xx
                          Last edited by Lynne K; 30 December 2021, 10:05.
                          ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                          I'm staying positive and taking each day as it comes.

                          Comment


                            #28
                            I have given up with phones for voice calls. I know it's scary but it's just one more thing at the end of the day. Stay Strong. 💪😁😍✌️xx
                            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                            Comment


                              #29
                              Undoubtedly very frustrating to lose your voice. If I have something to say in a conversation I tell people I will put my hand up so they wait for me to type it. I prefer to meet with at least 2 other people so they can at least talk amongst themselves rather than long silences waiting for me. My GP suggested using a child’s case for the iPad to make it easier to hold it. Will try with grandkids case before buying my own.
                              Diagnosed June 2019. Bulbar palsy. Lost voice. Using PEG fitted April 2021 alongside eating normally albeit slowly and messily at times.

                              Comment


                                #30
                                Hi

                                I have had Predictable 6 on an IPad I was loaned for a while now. I can still type but find it quite slow if you want to have a conversation. You can preset phrases in it and put them in categories. My Family etc. I got the hang of it quickly but find it best if you have certain phrases preset. I have made phone calls with it but am unable to answer any if my IPad is not nearby. You put it near the phone. I managed to do my Pip call on it but put in everything I was likely to be asked beforehand. Even then I was caught out. I have a set phrase "please wait while I type an answer" and start with "I have motor neurone disease and cannot talk". Miraculously my pip has just come through. When the hospital rung me it wasn't so good as the person on the other end heard silence and got impatient. My Salt was good on training me to use it but I am tech savvy. Just message me if you want to know anything x



                                Diagnosed 3rd November 2021 Bulbar Onset

                                Comment

                                Working...
                                X