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Thread: Hello

  1. #11
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    Hi Mini, Im sorry to hear of your diagnosis. Welcome to the forum xx I was diagnosed a couple of months ago. Be kind to yourself, things go up and down for a bit! But you'll find kindness in the strangest places. Lots of love, Lisa xx

  2. #12
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    Hello again, sorry it's taken me a while to come back to you all but still figuring out how all this works. Thanks for all the kind replies. My illness is of bulbar onset and I am already having problems with speech, swallowing and to an extent breathing although at least for now my arms and legs are more or less OK. I was waiting to be admitted to hospital for the final tests when I had an episode of stridor and went in via A&E, very scary and I'm frightened of it happening again. While I was in I got my diagnosis. My name is Mary by the way. Ellie, yes I have been seen by the speech and language people and have been referred to get sorted out with a communication aid which I believe is in the form of an ipad. One query - the physio has suggested getting a humidifier to help with breathing - there seem to be a lot of them on the market; does anyone have any recommendations?

  3. #13
    Forum Member Ellie's Avatar
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    Hi Mary,

    Did you have any breathing tests done yet?

    I'm a bit confused as to what the SLT meant by a "humidifier" to help your breathing - I'd suggest you first talk to your MND Nurse or ask Respiratory at your next clinic appt.

    If you need help breathing, a BiPAP machine (aka Nippy, NIV) is provided, if you want one.

    (I've a humidifier on my Nippy, but that's different to a room humidifier)

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  4. #14
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    Hi Ellie

    Thanks for replying. Sorry, I didn't make myself clear - I was seen last week by the respiratory consultant, respiratory nurse and the physio working as a team. I get very dry in my throat especially in the evening with the central heating on. I am using a nebuliser with just saline in which seems to help moisten the airways a bit, but it was the physio who suggested that a humidifier in the room might also help. I also get thick mucus in my throat and he suggested pineapple juice which does seem to help a bit with that. He is coming to see me at home soon. I have had some breathing tests and NIV has been discussed. My oxygen levels seem to be OK at the moment but I do have vocal cord paralysis. I am getting a monitor fitted tomorrow for an overnight sleep study at home. So I'm rambling on a bit but it is a normal room humidifier we were talking about.

  5. #15
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    Hi mini mum, I am relatively new to here but have had some good advice, my wife was diagnosed 4 months ago, we think back and some of the symptoms were there without knowing it, scuffing and sometimes tripping, loosing grip in one hand, we are still coming to terms with things, one think I can say is if you need things don't be afraid to ask, we have been lucky with all the aids we have. dave.

  6. #16
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    Hi mini, just reading about your breathing and central heating, my wife would rather have the heating off and have a blanket around her, also she likes to keep the living room door open, in the evening I get all the cold air as I sit nearest the door, I imagine the heating dry's the air out. good luck with everything.

  7. #17
    Forum Member Ellie's Avatar
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    Thanks for that Mary.

    As well as the pineapple juice, do try to drink a minimum 1800mls of water if you can which helps keep secretions thin.

    Have you tried Carbocisteine? And, if your cough is weak, a suction machine and a cough assist are more weapons for the arsenal!!

    You could try the very cheap trick of placing a small bowl of water beside each rad to see if that provides any humidity in the room, before splashing out on a humidifier.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  8. #18
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    Hi David, thanks for your replies. Yes, I think dry air is the enemy, sorry you're having to freeze! 4 months isn't very long to get over the shock, hope you're as ok as you can be.

    Take care

    Mary

  9. #19
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    Hi Ellie

    Thanks so much for your kind reply. I'm starting simple with the pineapple juice and will take your advice about the bowls of water by the radiators, definitely worth trying first, and will bear in mind your other suggestions.

    Love Mary

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