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  • Mazswann
    replied
    Thanks Mary Will try and stay positive. Maz x

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  • Mary C
    replied
    Hi Maz,
    hope you have a good palliative care team supporting you.This can take really help as you have a team to talk to as symptoms occur.The physio encouraged to to do exercise to try and relieve spasms .Hopefully the physical changes won’t come all at once.
    SALTteam can advise on voice and communication issues .
    Its ok to be grumpy ..but not all the time.
    For me the best thing is that as physical symptoms occur I can contact a member of palliative care team/ hospice team and they support myself and my husband.
    Its hard on our husbands/wives /partners having to watch us decline at the same time they have their own concerns and maybe fears.
    Have a grump,cry or whatever then try and enjoy the day as otherwise we waste the day we have.I too get fed up as I decline but have to self talk to ensure I don’t get into a pit of self pity.
    Sun shining here in Warwickshire and off for neurology review( never good news).but another opportunity to discuss symptoms and get advise.
    Best wishes
    Mary

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  • Mazswann
    replied
    Thank you Lynne and Elli.and for your kind words, I think I have just got to stop feeling sorry for myself and get on with it 🥱

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  • Lynne K
    replied
    Hi Maz. Good luck for solutions. Love and hugs 🤗 🤗 for you and Barry, Lynne x

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  • Ellie
    replied
    Sorry you're going through this Maz, Barry too

    Are you taking anything for the muscle cramps? Typically recommended are: magnesium supplements; CBD oil; heat; massage; quinine sulfate (prescribed)

    If your muscles are in spasm, an antispasmodic such as Baclofen, reduces muscle tone. CBD oil can often work on this too, depending on tone and/or oil strength and quality.

    Is that your only source of pain?

    Love Ellie.

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  • Mazswann
    replied
    Thank you guys , I’m not dealing with all this cramping one thing after another , in pain. spasms , any tips on how to cope?
    once the voice goes. And the tube /peg is fitted what other delights have I got to look forward to.
    a very grumpy Maz this morning 😳☹️Poor Barry (my partner)❤️

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  • denise
    replied
    Whatever works for you 😉

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  • richard
    replied
    Originally posted by Mazswann View Post
    Thanks Matthew I’ll give it a wirl 😊
    I think you mean a squirt Mazswann not a wirl. You want it up your nose not around the room😂
    Richard

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  • Ellie
    replied
    Mazswan A warm welcome to the forum Maz.

    I also use a salt water nasal spray. xx

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  • Mazswann
    replied
    Thanks Matthew I’ll give it a wirl 😊

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  • matthew55
    replied
    I had the same problem until a saline nasal spray came into my life. 👍xx

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  • Mazswann
    started a topic Blocked ears

    Blocked ears

    Hi everyone,

    I was diagnosed with bulbar onset back in February of this year. I can still speak (sound very drunk😂) but when I do talk I sound very robotic in my head and I think this comes from not being able to blow my nose properly. Any advice on how to relieve this and get the satisfaction of an unblocked nose? Any advice will be gratefully received!
    Thanks, Maz x
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