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  1. Replies
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    Ellie - you are my guru! Is there nothing you...

    Ellie - you are my guru! Is there nothing you don’t know?! Thanks so much for this, it’s really helpful.

    How have you adapted to not speaking? I think I’m approaching that myself. I keep trying to...
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    Neck support advice wanted

    Evening all

    My head now needs support some/most of the time and Iíve been given a foam supper by my physio but am finding it very restrictive- I canít speak when wearing it (not without sounding...
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    Thanks all. Fantastic, supportive advice - as...

    Thanks all. Fantastic, supportive advice - as ever. It’s encouraging just to know we can come through this. We’ve always had such a strong, communicative relationship and I know deep down we better...
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    Marriage suffering

    Hi all

    First off, Iím not writing this for any sympathy- I guess I just want some advice and maybe some reassurance that things will get better. Though Iím not holding out much hope if Iím honest....
  5. Thanks so much, these are great ideas. I donít...

    Thanks so much, these are great ideas. I donít mind using aids that will help, itís more a matter of not knowing what might work so these suggestions are great. Thank you. Iím with you - anything...
  6. Thanks both. Iím getting my peg fitted next...

    Thanks both.

    Iím getting my peg fitted next week (hopefully Iíll be 3rd time lucky!) and my dietician has already brought me some supplement drinks as well. As for the cramps and fasciculations,...
  7. Bulbar symptoms worsening, and persistent fasciculations

    Hi there

    I was diagnosed in August this year and have experienced a steady decline until the last 2-3 weeks when Iíve deteriorated quite rapidly. I now canít walk at all unaided (& not far with a...
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    Hi John, I noticed this post from earlier this...

    Hi John, I noticed this post from earlier this year. How are you doing now? I was only diagnosed in August this year but already my bulbar symptoms are quite bad. In particular my throat muscles are...
  9. Wow, you are all so kind and inspirational- thank...

    Wow, you are all so kind and inspirational- thank you! I think I just sometimes need just a glimmer of hope and youíve certainly given me that. I think my downfall is reading comments on social media...
  10. Reassurance (or honesty) needed! Warning: potentially sensitive discussion.

    Hi all

    I was diagnosed this August and seem to have had a fairly rapid deterioration over recent months. My very first symptoms started late last year but progression really started around April,...
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    Hi Dina Iíve got Acapela software, having...

    Hi Dina

    Iíve got Acapela software, having banked my voice recently, which my community team arranged for me. I have it on my laptop (Windows) and itís really good. While Iím waiting for a tablet...
  12. Thread: Tckly cough

    by SarahWP
    Replies
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    882

    I have liquid paracetamol so Iíll try that,...

    I have liquid paracetamol so Iíll try that, thanks. And will speak to my respiratory nurse again. My throat feels tighter now, generally, so I should probably tell them that anyway - a nebuliser...
  13. Thread: Tckly cough

    by SarahWP
    Replies
    5
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    882

    Hi Ellie Nice to hear from you. Great advice,...

    Hi Ellie

    Nice to hear from you. Great advice, thanks. Itís hard to describe the cough. I guess itís more a chest irritation. Literally every breath in irritates it & makes me cough/grunt. So you...
  14. Thread: Tckly cough

    by SarahWP
    Replies
    5
    Views
    882

    Tckly cough

    Evening all

    I currently have a persistent tickly cough and I have no idea what it is. I actually first had it about 2 months ago for a few days then it went completely but has now come back. It...
  15. Love the hydrotherapy & music idea - will ask...

    Love the hydrotherapy & music idea - will ask about those as I know my MND clinic venue offers some complimentary therapies. I used to sing a lot and really miss it. So this might be a good...
  16. I love this forum! Everyoneís so lovely. 💕 My...

    I love this forum! Everyoneís so lovely. 💕

    My physiotherapist is coming on Monday with 2 Zimmer frames, which she said will be better for me for around the house (Iíll have 1 for upstairs & 1 for...
  17. My head is a little tender but otherwise fine -...

    My head is a little tender but otherwise fine - think I must have a very thick skull!!

    Today we had an alert system installed whereby I wear a buzzer which summons help if I need it. Sue (my wife)...
  18. Itís so lovely reading all your messages, thank...

    Itís so lovely reading all your messages, thank you for taking the time to share your experiences - & your wisdom.

    I had a nasty fall tonight- fell backwards, cracking my head on the floor- yikes....
  19. Thanks so much ladies Itís good to know Iím...

    Thanks so much ladies

    Itís good to know Iím not alone - well, obviously itís not good but you know what I mean...

    This has all really, genuinely helped. I will do my best to celebrate what I...
  20. Limbs suddenly much heavier. Need tips to cheer me up!

    Hi all

    I was diagnosed 2 months ago & on the whole, my wife and I have handled it reasonably well, staying as positive and cheerful as possible. Iím fairly accepting of it and appreciate these...
  21. Thanks both for the advice. Iím hoping itís a...

    Thanks both for the advice. Iím hoping itís a matter of confidence but it feels a bit scary! Good advice re slowing down on corners/slopes - I had wondered if it might be safer to go fast so it...
  22. Rascal Ultralite 480 mobility scooter - advice needed

    Hi all

    I recently acquired a pre-owned rascal ultralite 480 scooter which came highly recommended and certainly it seems fab. I took it out for its maiden trip today and whilst itís very easy to...
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    Thanks all. Weíre seeing the consultant tomorrow,...

    Thanks all. Weíre seeing the consultant tomorrow, to discuss the operation so Iíll ask about the rig. Thanks for the tip.

    :-)

    Sarah xx
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    Hi everyone, thanks for your encouraging words....

    Hi everyone, thanks for your encouraging words. Im so touched by how caring this Forum us. As it happens , when I went in yesterday they ended up not having a bed for me but promised me one today. So...
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    Thanks all. I feel Iíve made a bit of a fuss over...

    Thanks all. I feel Iíve made a bit of a fuss over nothing, as itís just a sore throat - so sorry! I think I was just a bit alarmed by how it came on. I also hadnít been sleeping well for a few days...
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