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  • LindaB
    replied
    I agree with Ellie....every professional has an e-mail address and contact details...they may be reluctant to share ...however of course they should always. It's stressful to try to make phone calls when speech is an issue. 😘

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  • Ellie
    replied
    Originally posted by Heather R View Post
    The district nurses don't have an email address to give me
    They probably do, it's just not 'normal practice' to give them out, citing a 'security risk' or some other rubbish excuse.

    I used to get that years ago but now it's standard practice to get email addresses, phone numbers and working hours from all my healthcare professionals (in my health service)

    Hopefully your phone message arrangement continues to work well xx

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  • Heather R
    replied
    The district nurses don't have an email address to give me, the boss admitted they ought and has complained (who to?). She helped me type out what to say when I phoned their number, and it is put in my file to visit me if they get this message. When my tube leaked, I tried it and it worked thank goodness x

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  • Lynne K
    replied
    Ellie yes Ellie, I’ve done online chat several times with shops xx

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  • Ellie
    replied
    Originally posted by GillB View Post
    Miraculously my pip has just come through.
    Woohoo Gill 👍👍

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  • Ellie
    replied
    If phoning isn't an option, we should all have email contacts for all relevant healthcare professionals, from the GP to the Clinic/Consultant, and everyone in between. Yes, somtimes others can phone on our behalf but really we should be able to communicate directly with our HCPs, about our health (unless it's not the preferred option)

    For non-health matters, if at all possible, I use the online 'Chat' facility many retail and government departments have, it's usually much quicker than phoning them anyway, and no annoying muzak 👍👍

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  • GillB
    replied
    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



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  • John D
    replied
    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.

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  • matthew55
    replied
    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

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  • Lynne K
    replied
    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.

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  • Mary C
    replied
    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

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  • Mary C
    replied
    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

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  • matthew55
    replied
    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

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  • Heather R
    replied
    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

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  • Graham
    replied
    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!

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