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  1. Thread: This forum

    by David R
    Replies
    20
    Views
    2,570

    Hi Matthew, I don’t want to make you feel any...

    Hi Matthew,

    I don’t want to make you feel any worse but I must admit I’m having similar thoughts especially if you look at the amount of views generally against posts. Seems that some postings...
  2. Replies
    7
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    1,171

    Thanks Ellie, I was hoping you’d recommend the...

    Thanks Ellie,
    I was hoping you’d recommend the button type and at least I’ve been told I can revert back to the normal tube if I wanted to, They have already measured and ordered the Mic-Key one ...
  3. Replies
    7
    Views
    1,171

    RIG tube or a Button

    Hi, Iíve currently got a RIG tube with the tube hanging out which I have to tape to my skin/tummy which causes a bit of sourness and is quite obvious through a tee shirt. Iíve had the offer to change...
  4. Replies
    8
    Views
    1,085

    Hi Mathew, I struggled with Rilozole a year...

    Hi Mathew,

    I struggled with Rilozole a year ago and some get stuck in my throat resulting in me hardly being able to breath, they can have a aesthetic type affect. I overcome it in the end by...
  5. Replies
    10
    Views
    2,406

    Hi Mathew, I was diagnosed with the same bulbar...

    Hi Mathew, I was diagnosed with the same bulbar MND 16 months ago, did a voice bank but it wasn’t very good and I’ve been trying Predictable but really not happy with it. Now started Proloquo2Go and...
  6. Replies
    2
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    1,010

    Hi Lea, I’ve just had exactly the same issues...

    Hi Lea,
    I’ve just had exactly the same issues since day one and for over a month with infection and granulation increasing in size, first suggestion was to use a steroid cream which didn’t work then...
  7. Replies
    12
    Views
    2,500

    Hi Lynne, Just thought Iíd give you an update on...

    Hi Lynne, Just thought Iíd give you an update on the speech apps. I found out that Proloquo2Go also do an app called Proloquo4text which they can use your own voice on, to late for me to record again...
  8. Replies
    19
    Views
    3,468

    Hi Andrew, Welcome to the forum, sorry about...

    Hi Andrew,
    Welcome to the forum, sorry about your diagnosis.

    I and 67 and was diagnosed 16 months ago with Bulbar onset and live about 50 ish? miles from you in Ipswich. I’ve learned a lot since...
  9. Replies
    12
    Views
    2,500

    Hi Lyn, I’ve now found out that I can use my own...

    Hi Lyn, I’ve now found out that I can use my own voice on Proloquo4Go. I spoke to ModelTalker and they kindly sent me the files of all my recordings FOC which I can now give to Acapela who said they...
  10. Replies
    12
    Views
    2,500

    Hi Lynne, Re your comments about voice banking...

    Hi Lynne, Re your comments about voice banking and predictable, I agree, do it as soon as possible, I did mine asap but unfortunately it was already a bit late for me and although it sounds like my...
  11. Replies
    12
    Views
    2,500

    Hi David, Welcome and sorry about your...

    Hi David,

    Welcome and sorry about your diagnosis, I know where you are at the moment I was in the same place this time last year. Takes a bit of getting your head round but once you have its time...
  12. Thread: Ivan

    by David R
    Replies
    11
    Views
    2,068

    Hi Ivan, Sorry about your wife’s diagnosis, I...

    Hi Ivan,

    Sorry about your wife’s diagnosis, I agree with Doug about the calories drinks and puddings. Even though last
    year I was still eating quite normal amounts I lost a stone in weight and...
  13. Thread: NurOwn

    by David R
    Replies
    10
    Views
    4,040

    Hi, Just thought I’d ask if anyone else on the...

    Hi, Just thought I’d ask if anyone else on the Forum is on the Mirocals trial which I am and have been for a year now with 6 months left before it finishes, I know theres about 200 people in the UK...
  14. Replies
    30
    Views
    5,349

    Hi Boiler, Yes, I really hope my information will...

    Hi Boiler, Yes, I really hope my information will help him, just a curious question, Boiler 68? does that mean he was a plumber/ boiler installer? Big coincidence if he was because I was a Gas safe...
  15. Thread: Please help

    by David R
    Replies
    12
    Views
    2,464

    Hi Sarah, Sorry to hear of your worries, I was...

    Hi Sarah,

    Sorry to hear of your worries, I was diagnosed with Bulbar onset 16 months ago but if itís any help Iíve never had tongue twitches despite the fact my tongue has shrunk dramatically as...
  16. Replies
    30
    Views
    5,349

    Hi Stoehengeman, I’m currently having similar...

    Hi Stoehengeman,
    I’m currently having similar issues with my tube and over granulated skin with daily discharge, I tried the steroid cram the nutrition nurse suggested, no result, GP gave me...
  17. Replies
    30
    Views
    5,349

    Hi Lesley, Sorry to hear about your mum and I...

    Hi Lesley,

    Sorry to hear about your mum and I hope she gets the tube soon. I can sympathise with her eating issues, it did get to me a bit when stuff kept falling back out of my mouth! this is...
  18. Replies
    5
    Views
    1,669

    Hi Peanut, Sorry about your the diagnosis....

    Hi Peanut,
    Sorry about your the diagnosis. Regarding voice banking I was referred to our local speech therapist who pointed in the right direction and lent me a microphone. Have you not been...
  19. Thread: Weird speech

    by David R
    Replies
    7
    Views
    2,316

    Hi Paula, If its any help my first signs (20...

    Hi Paula,

    If its any help my first signs (20 months ago) were difficulty speaking, not so much slurred or bad pronunciation, it was more about the effort and concentration I seemed to have to be...
  20. Replies
    30
    Views
    5,349

    Thank you Ellie, I love the voice the Lost...

    Thank you Ellie,

    I love the voice the Lost voice guy uses (Graham) sounds a lot more sophisticated than my voice, joked to my wife that I’m going to become a comedian! and probably better...
  21. Replies
    30
    Views
    5,349

    Hi Doug, I’m pleased this may have been of...

    Hi Doug,

    I’m pleased this may have been of help to you, I know exactly how you feel, I felt like it was step downwards and giving in to MND, I had actually booked the procedure three months before...
  22. Replies
    30
    Views
    5,349

    Hi Ellie, Thank you for your reply. Re the...

    Hi Ellie,

    Thank you for your reply.

    Re the tube feed, I must admit, one of the reasons I posted that is because I have met three people with MND who have totally refused it and two of them have...
  23. Replies
    30
    Views
    5,349

    David R RIG Fitting

    Hi, I now realise that I should have joined this forum a long time ago but like a lot of us with MND I was in denial for a long time.

    I was diagnosed with Progressive Bulbar Palsy MND in January...
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