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    #16
    Originally posted by PeterPan View Post
    Yesterday I went out with former colleagues and one person just couldn’t understand a single word of what I was saying. That was a first for me.
    I'm sorry to hear that Peter - I can still remember being told that same thing and feeling both shame and embarrassment, it a hard thing to hear, isn't it...

    It's a plus that you have your own voice to speak your written words for you in the future. It's one heck of an adjustment but we do adjust to it (mostly 😏) and preserve our personality, albeit with a slightly less quick wit 😊 😘
    ​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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      #17
      Mary C Mary, I have no intelligible speech although my husband can make out some of what I’m saying if he knows the context. On the advice of my S&LT I banked my voice with SpeakUnique but wasn’t happy with the result, so following advice from other users on this forum, I now use Predictable with a voice that is not my own. Today I’ve attended a birthday gathering for my husband’s aunt’s 96th and everyone was quite happy to listen to the app. It particularly suited Auntie as she’s a little deaf so she read what I’d typed as well as listening and it helped her to follow. The only disadvantage is that often the conversation has moved on to a new topic before you have finished typing. I also spent a couple of nights in a hotel earlier this week and the young waiting staff looked quite interested and attentive to what I was saying. Losing your ability to speak can be isolating but the apps at least give you some sort of a voice and all my friends have been happy to wait patiently while I type what I want to say.

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        #18
        Yes, we become less of a 'person' when we lose our voice and when we become bed bound, some will think even less of us and may call us 'weirdos'.

        I find humour helps in these situations but we definitely need to be on our guard against this majority. I struggle to find an answer, lepers can move to a colony but we must retreat within ourselves to survive.
        Copyright Graham

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          #19
          Can I ask where to find Predictable as a few people mention the app...is it expensive?
          Also what's a Boogie Board...mentioned a lot?

          ​heartbreaking for us to lose our voices....I also sense the resilience in the discussion and yes I'm sure we will adapt...adjust....restore equilibrium....eventually 💋
          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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            #20
            Originally posted by LindaB View Post
            Can I ask where to find Predictable as a few people mention the app...is it expensive?
            Also what's a Boogie Board...mentioned a lot? 💋
            Hi Linda, Predictable is available in the Apple App Store (and the equivalent Android place, I’m sure). It’s incredibly expensive! My speech and language therapist provided me with an Apple voucher to enable me to get it for free - funded by the MNDA. Once you have it you can assign your banked voice (pre-recorded using online software called Acapela) as the voice to use. You can set up phrases you think you might want to say and delete any stock phrase you don’t like. All a bit complicated but you get help (around here they even give you an iPad if you don’t already have one!)

            I needed help finding a Boogie Board too (on Amazon you just get mini surf boards in your search ). Try searching for ‘writing tablet’. They're about £20, you can ‘write’ on them using a special stylus and then push a button to erase the screen. Very simple, but miles better than using reams of paper. I’m ordering one today to take to the pub next time 😬
            Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

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              #21
              I have five boogie boards
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                #22
                PeterPan thanks Peter will buy a Boogie Board today....look into the predictable app with the SALT team Monday 👍
                matthew55 You mention Boogie Boards quite a bit so you're obviously a fan FIVE! I'll order one today....👍
                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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                  #23
                  Crikey so many to choose from....any recommendations I don't mind paying a bit more ....😇
                  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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                    #24
                    Hi Linda
                    Good to get prepared with Predictable App and boogie board.I am practicing on Predictable App as not very IT savvy and feel I need to know my way around it before I need to use it.
                    Still have a voice today albeit croaky and slower.Off to a wedding later so time to get ready.
                    Have a good day
                    Best wishes
                    Mary

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                      #25
                      I hope that you have a lovely day at the wedding Mary. Love Lynne x
                      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.

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                        #26
                        I have 2 boogie boards bought via Amazon. Ist one NEWYES not very good. Very faint from the start and wondering whether battery needs replacing. 2nd one GUYOCOM probably for kids because several colours when you write with it but much better and cheaper than many. Sent another one back because I didn’t read spec properly and it was for kids with tracing sheets.

                        Read reviews before you buy but you can always send back if you don’t like it.

                        By the way, lots of advice about voice banking on MNDA website + a podcast. MNDA will buy Predictable for you. I decided to donate cost back with gift aid. Will also loan iPad.
                        Diagnosed June 2019. Bulbar palsy. Lost voice. Using PEG fitted April 2021 alongside eating normally albeit slowly and messily at times.

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                          #27
                          Mary C I'm the same voice a bit and miss but still there (just). Lovely news a wedding hope you really enjoy...my grandson proposed to his girlfriend last week (very romantic in Ibiza)so I'll have to buy a new hat soon.

                          Thanks John D yes on Amazon there are so many....I'm trawling through reviews. Will take a look at the MNDA advice too.

                          Just want to be prepared and will be useful on days when fatigue is worse...hope for the best plan for the worst...I think that's the saying👍​​​​​​​
                          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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                            #28
                            Originally posted by LindaB View Post
                            Crikey so many to choose from....any recommendations I don't mind paying a bit more ....😇
                            I bought this one recently it just looks like an iPad and magnetic slot where pen goes I find that easier 👍 Janette x
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                            Janette x

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                              #29
                              It is obviously frustrating to lose your voice and sometimes sad but no reason to feel ashamed or embarrassed. It’s more difficult communicating in a group but people understand and are usually patient enough. I have a standard saved sentence on Predictable that I still have a voice of sorts but use this device more although it means I’m usually 2 conversations behind. What I don’t like is people uninvitedly reading what I’m typing either over my shoulder or upside down and finishing my sentences!

                              Strange thing in my experience is that the Predictable app is not very good at predicting what you’re trying to type unlike this forum which is brilliant at predicting.

                              I do admire Ellie who uses eye gaze to type as much as she does.
                              Diagnosed June 2019. Bulbar palsy. Lost voice. Using PEG fitted April 2021 alongside eating normally albeit slowly and messily at times.

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                                #30
                                John D Thank you! 😘😘
                                ​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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