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  1. Replies
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    Thanks Sue I like these ideas. Not sure I could...

    Thanks Sue I like these ideas. Not sure I could get my dad to go for drinks or food though as he’s v self conscious :(
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    Thanks Barry this is what we are waiting for him...

    Thanks Barry this is what we are waiting for him to be assessed for - is it possibly something he could just try anyway beforehand do you think? As it is taking so long
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    Thanks Ellie They’ve said they work on the...

    Thanks Ellie

    They’ve said they work on the basis of Hope & if it could be reversible they check for that I suppose. We don’t know what to think :(

    Do you have regular checks EMG wise is that...
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    Thanks Dina, all good ideas! The problem is...

    Thanks Dina, all good ideas!

    The problem is that since being diagnosed and even before with the disabilities he was experiencing my dad has completely lost his confidence. Hel stay in and find any...
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    Hi Lynn How are you doing now? Last few...

    Hi Lynn

    How are you doing now?

    Last few days my dad has started coughing too, feeling like he needs to clear his chest but can’t cough strongly enough to get it up :(

    It is worrying. Hoping...
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    Thank you both for you kind help! It is...

    Thank you both for you kind help!

    It is frustrating when we get equipment with no explanation

    It is more that it whizzes around the screen too fast for my dad to press it in time to select what...
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    Hello :) My dad has this same problem and...

    Hello :)

    My dad has this same problem and asked wheelchair services who fitted arm rests /troughs to his wheelchair which better hold his arms up and in place

    I would try them :)
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    Ideas for short trips out pls

    Hello all

    My father has difficulties in his wheelchair for long periods of time and has to use urine bottles - he has been on the list re assessment for other options for months.

    I’m worried my...
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    Repeat emg tests

    We’re told “probably MND” but then things seem stable for a long time and now they want to repeat the EMG tests

    Should we have hope or not?
  10. Thread: Clothing?

    by Vicky86
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    Clothing?

    Has anybody managed to find a clothing supplier for men that does trousers so that those without much arm mobility can use urine bottles?

    And anywhere that makes shoes large enough for feet with...
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    Thanks both We have it connected to the iPad...

    Thanks both

    We have it connected to the iPad and it goes around the screen etc so dad can select the options he wants but he gets stuck in that it doesn’t go everywhere etc so how does he control...
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    Thanks Terry Do you feel your guegling is mnd...

    Thanks Terry

    Do you feel your guegling is mnd related? I wonder if my dads may be as they did say the EMG showed some activity in his stomach and he gets shakiness in his stomach too
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    Thanks Lynn - helping me with a lot - appreciated...

    Thanks Lynn - helping me with a lot - appreciated :) I will tell my dad your advice :)

    If you don’t mind me asking, how long have you been taking Riluzole? Have you found it helpful?
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    Thanks all will look into all of these :)

    Thanks all will look into all of these :)
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    Thank you Ellie this is helpful I understand more...

    Thank you Ellie this is helpful I understand more now how the diagnosis is approached.

    I see you have been battling this for a very long time - good on you and you seem to be doing very well with...
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    It really does thank you for sharing x

    It really does thank you for sharing x
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    The uncertainties continue! You strike me as such...

    The uncertainties continue! You strike me as such a stoic amazing lady Lynn - good on you ����
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    Thanks Andy all of this does help and make sense...

    Thanks Andy all of this does help and make sense - my dad was always constantly cheerful so it’s hard to see the change in him. He did say today he feels more comfortable when he’s around people at...
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    Thanks Dina I will try this - the problem is my...

    Thanks Dina I will try this - the problem is my dad doesn’t want any help with things mentally - he avoids going out as he feels people will stare at him, he doesn’t feel like himself anymore, cannot...
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    I wish you all the best Lynn. I know what you...

    I wish you all the best Lynn. I know what you mean about kernels - we go out and have problems with cars blocking pavements, tree roots and lack of dropped kerbs - it’s frustrating that people don’t...
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    Length of time to specific MND diagnosis?

    Hi all

    My father has been diagnosed with probable MND - I am aware everyone is different and MND is different for each person but wondering if you can share roughly how long it was until your...
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    Riluzole side effects

    Does anybody else experience - headaches? stomach gurgling? sleepiness? with Riluzole?

    Hard to tell which are MND related and medication related sometimes

    Thanks
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    urine bottles - alternatives?

    Hello all

    My father uses urine bottles at the moment but is now finding his arm weakness is getting worse so this is becoming very difficult also - he doesn't like the idea of having a sheath just...
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    Buddy button for Ipad

    Hello guys

    Wondering if anybody knows of any manual etc online for the use of the buddy buttons with the Ipad?

    We are finding that specialists come to install these for my dad but they never...
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    I know there are other drinking cups with long...

    I know there are other drinking cups with long straws that don't require a strong suck to get them to work as they are presently looking into one of these for my dad - may be worth asking the OT,...
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