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  • Sheila
    replied
    Hi all!

    Plenty of food for thought there and it's all appreciated!! It does sound very much like Kayleigh had but I also get quite a build up of mucus at the back of the throat so I am not going to rule out anything. Could very well be Laryngospasm! Seems like a lot of you guys out there have had it (or it's ongoing.)

    Best thing for me is to try and keep calm! My husband is always telling me to relax but that's easier said then done lol.

    Once again! Thank you all for the advice. That's given me some much needed peace of mind!

    Love
    Sheila x

    Leave a comment:


  • Terry
    replied
    Hi All,

    I used to wake up suddenly and couldn't breathe. It hasn't happened for six or more months..

    It is very distressing to say the least but I thought that the worst that could happen would be that I would pass out and then relax and breathe. I never did get to that stage and was more relaxed from then on.

    So it well could have been a Laryngospasm.

    Love Terry

    Leave a comment:


  • Kayleigh
    replied
    Thanks Ellie.

    It's very kind of you to give us such detailed advice and information.

    I hope you are enjoying your first Spring-time in your new home.

    Love
    Kayleigh xx

    Leave a comment:


  • Ellie
    replied
    Hi Kayleigh,

    If you don’t fit into either Sheila’s or Mick’s categories make sure your neck is properly supported in bed and not strained backwards or at an angle that restricts free airflow through the airway - actually, that applies to us all! This may involve faffing around with pillows or have (an exasperated) someone do it for you.

    Love Ellie.

    Leave a comment:


  • Ellie
    replied
    Hi Mick,

    Your experience may have also been a Laryngospasm or just a blockage.

    Yes, it's a good idea to have a nebuliser as your disease progresses. (Ask your GP to prescribe one for you)

    It is used for helping to break up and clear mucus from the airway and in MND is usually used just with saline.

    Love Ellie.
    Last edited by Ellie; 23 April 2019, 13:36.

    Leave a comment:


  • Ellie
    replied
    Hi Sheila,

    What you describe sounds like a Laryngospasm - a spasm of the vocal cords - which will affect your breathing.

    It is a scary thing to happen but, and I know this is much easier said than done, the best thing to do is to go to that happy place in your mind and relax It will subside...

    In ALS/MND it often happens in bed (or lying down) and could be triggered by acid reflux on the vocal cords or anxiety/panic.

    If you think you get reflux, maybe ask your GP for preventative meds. If it’s due to panic, it could be down to inefficient breathing or secretions partially blocking your airway.

    Love Ellie.

    Leave a comment:


  • Kayleigh
    replied
    Hi Sheila,

    I've had times when I have woken up in the night feeling like my throat is blocked, and I have been gasping for breath for a while before my breathing settled. I don't know if it is linked to anxiety, but like you, I found it upsetting and made me panic. I've had my breathing checked at my MND clinic and told that my ability to breathe is OK - and so I don't know what caused it.

    My ability to swallow is not as good as it was but I am managing not to choke on food.

    Hopefully your dietitian has given you some good advice about what is easier to eat, if you are finding swallowing more difficult.

    I agree - coping with MND is far from easy!! Taking one day at a time and lots of hugs from my family is how I am coping at the moment - and keeping in touch with the fabulous folk on this forum helps me tremendously.

    Sending love and hugs,
    Kayleigh x
    Last edited by Kayleigh; 24 April 2019, 11:50.

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  • mickmac
    replied
    Originally posted by Sheila View Post
    Funnily enough! I woke up very early this morning due to my throat closing over (nasty!) That sent me into a complete panic/meltdown. My voice isn't as great as it use to be. Finding this all very, very scary and frankly, it's getting me down big time.

    Anyway! Thank you guys for the advice.

    Love
    Sheila x
    Hi Sheila
    Just looking at your message about your throat and I had a similar enough experience two weeks ago. I haven't had a feeding tube yet but have noticed my swallow is a bit weaker. Lucky for me I was in the hospice at the time for a week of respite. I woke up from an afternoon nap and found breathing some what difficult and my throat felt a bit blocked. After calling the nurse and she checked my heart and blood pressure she recommended a nebuliser to clear my throat. I'd never used one or heard of them being used for mnd but I tried it out and after just five minutes my throat cleared up and my breathing was back to normal. I don't know if it would help you if you have similar problems but I'm going to check with my clinic later on this week when I'm due up there. You could check with your own doctor or maybe someone on here would let us know if they're used by them.

    Mick.

    Leave a comment:


  • Sheila
    replied
    Funnily enough! I woke up very early this morning due to my throat closing over (nasty!) That sent me into a complete panic/meltdown. My voice isn't as great as it use to be. Finding this all very, very scary and frankly, it's getting me down big time.

    Anyway! Thank you guys for the advice.

    Love
    Sheila x

    Leave a comment:


  • shrew
    replied
    Mick had a rig done in january. At the moment he just has 50ml of water through it. He is eating ok at the moment.

    Leave a comment:


  • Gillette
    replied
    Hi Ellie,

    Yes, I have read on here that one doesn't have to use the tube fully. That was one thing that was influencing my attitude.

    I'm afraid I'm not one of the fortunate ones. I have begun to have problems with swallowing, coughing and weakness in my voice. The progression of my MND is the only thing about me that is fast!

    Leave a comment:


  • Ellie
    replied
    Hi Gillette,

    You're right to do your research on feeding tubes but you also should know what happens *IF* you opt not to have one and are unable to swallow safely - have full info from both sides so you can make an informed decision best suited to your wishes, and yours alone.

    You'll also see on this thread that just because you have a a feeding tube, you don't have to use it fully - for example, you might decide to use it only for meds and fluids, not nutrition.

    Also a feeding tube can be easily removed and the site and tract closes over surprisingly fast!

    It's important note that although the majority of us with ALS/MND develop swallowing and/or eating issues, some "fortunate" people don't.

    Love Ellie.

    Leave a comment:


  • Terry
    replied
    Hi Sheila;

    It's not common for specialists to say that. Perhaps he thinks you type of Mnd won't affect your swallowing for quite a while.

    Hope that's the case.

    Love Terry

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  • Sheila
    replied
    Gillette, I know what you mean, my mnd seems to be affecting my legs now feeling more weak. I have osteoporosis As well. When I first saw the specialist who diagnosed me, I asked him about feeding tubes, he said he wouldn't have it. But I think maybe he was just trying to keep me calm.

    Leave a comment:


  • Gillette
    replied
    I know what you mean about being confusing, Sheila. However, having read all the posts on this thread I am thinking that I should opt to have a PEG fitted sooner rather than later, particularly as my MND seems to be progressing quickly.

    Leave a comment:

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