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  • Guest
    Guest replied
    Hi ellie, we are new to this disease, don't know what a PFT is, but we are of to bed now so good night.

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  • Dan
    replied
    Ellie...as a kiwi and an all blacks supporter I must concede that yesterday’s game was fantastic and a well deserved win for Ireland. It was so exciting as rugby should be!
    I think most of NZ are stunned by the defeat but all agree it’s good for rugby.
    While posting I must add that I also think your knowledge and advice is so valuable to us all...you are very much appreciated....Dani

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  • njm
    replied
    In Rugby Union Ireland plays as one country (Republic and N Ireland).
    Might there be a lesson in this.......................?


    Charles

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  • njm
    replied
    Ireland were magnificent.

    They destroyed NZ.
    They destroyed their scrum, crossed their line 3 times, and defended the gain line like it was the Brexit border.

    Freedom of the city to every one of the green heroes.

    Charles

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  • Ellie
    replied
    Kayleigh, it's The Little Drummer Girl for me (but nothing will beat the excitement of last night's thrilling Ireland v NZ match!!)

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  • Ellie
    replied
    You're very kind Skip!!

    If your dad is more tired in the evenings or if he's after a nap, it could be his breathing.

    If he's like me when I'm tired, even breathing is an effort and can make me hot, but my lung function is quite poor.

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  • Kayleigh
    replied
    Ellie - Thank you for you detailed explanation about hot flushes.

    Hope everyone has a good evening. Sunday night is TV night for me - The Chase.

    Kayleigh x
    Last edited by Kayleigh; 21 November 2018, 23:02.

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  • Guest
    Guest replied
    Hi Ellie. I can't tell you how helpful you are. You just speak so much sense. Positive and practical - Its so nice to know you're there - wish I could give something in return! For us It could very well be Dad's breathing. I think he is going to go the no mask route. Is thete a normal time when breathing may become more difficult? Would it make sense that that would be in the evening?

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  • Ellie
    replied
    Hi David and Skip.

    ALS/MND can interfere with how the body sweats, but it is important to rule out other possible causes too.

    Assuming the hot flushes aren't hormone related, they could be due to side effects of meds, stress or breathing issues.

    For example, people with weakening respiratory muscles can't breathe deeply and find moving air reassuring. This can be stressful for both the body and the person and can be worse after eating a meal or with fatigue.

    Have either had recent Pulmonary Function Tests (PFTs) ?

    If either has a BiPAP / Nippy machine, a few hours daytime use may be the answer.

    Love Ellie.
    Last edited by Ellie; 18 November 2018, 15:59.

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  • Guest
    Guest replied
    We have that too. Particularly in the evening. We also usually have a fan on.

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  • Guest
    Guest started a topic Hot flushes

    Hot flushes

    Hi, can anybody tell me if hot flushes and needing fresh air is part of mnd, my wife gets hot and bothered, asks if the heating is on, I am sitting here now with the French doors open to try and cool her down?
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