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Thread: The daily dribble

  1. #211
    Forum Member Tim-griffiths's Avatar
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    My wife seems to be coping very well, her emotional liability is now under control thanks to the citolpalm drops so she isn't crying these days, well not normally, but when we visit the daughter and her family the tears flow for a little while, she is totally incomprehensible in speech but still writes everything down and says she want to live long enough to see the grandchildren grow up, I think that's what drives her on the most. she still trying to do all she can but tires fairly quickly and has to stop for frequent short rests but refuses to just sit down and give in. We don't sit down and talk about her mnd exactly but we do talk about it in round about way.
    As her career and fully employed ( although my doctor has signed me off with stress at the moment ) , I do find it difficult, but at least she is still with us and hopefully in years to come she will still be here to watch the grandkids grow to adulthood.
    Ok that's me over for now
    All the best
    Tim

  2. #212
    Forum Member Terry's Avatar
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    Tooth saga?

    25th April, I wrote this:-

    Still I have been getting my spirits up until about a week ago my tooth had a great pain and a few days after that I had my toe nail cutting into my toe. Still went to dentist yesterday and he cured the problem, well until half way through my dinner that night.

    And this:- PS:- Dentist appointment 21st May unless I can't eat or it is painful

    This morning, I found a large hard bit in my breakfast, it was over half a piece of that tooth, dam. Not painful, YET but quite sensitive to cold and no appointment till next Wednesday with my dentist and it would be hard for me to see anyone else.

    Love Terry

  3. #213
    Forum Member Ellie's Avatar
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    Do you have the bit of tooth? You can try sticking it on with dental cement from the pharmacy - it's for emergencies like this.

    Otherwise it'll be saucers of milk for you

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  4. #214
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    Hi Terry

    It sounds like its become a bit of an emergency now to me, maybe your dentist can get you in much sooner then the 21st, which seems like a long wait away.

    Try to avoid cold things if possible, and good luck I hope your dentist can make it better quickly for you.

    CCxox
    .

  5. #215
    Forum Member Terry's Avatar
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    good idea Ellie;

    but the bit has gone missing and it was a side bit that has gone leaving a white filling that is very sharp and making my side back of tongue sore. I have an appointment for tomorrow to take the sharpness off.

    It's OK if I don't move my tongue, not so much of a problem for men.

    So it's feeding tube feeding for me.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  6. #216
    Forum Member Ellie's Avatar
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    Good job you have the tube. If you can tolerate a salt mouth rinse or an antibacterial mouthwash to kill the lurgies, it's probably wise to do so.

    Good luck tomorrow. Onwards & upwards!
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  7. #217
    Forum Member Barry52's Avatar
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    Hi Terry,

    I can sympathise as I had a similar experience a few months ago. Why is it that your tongue always catches the sharp edge? I’m pleased you got an emergency appointment. When you are in the chair ask the dentist to sort the filling out at the same time. I did and she was very obliging as they know how difficult it is for us to attend clinic.

    Barry x
    Iím going to do this even if it kills me!

  8. #218
    Forum Member Terry's Avatar
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    It is just a bad time at my Dentist and they haven't got the time.

    He is a nice chap that is almost a friend but it takes a long time to do anything in my mouth because of water or anything causes me to choke and I have to swallow so often.

    Mouth wash is a good idea Ellie and I do use it in the shower but have to be careful of mess if not.

  9. #219
    Forum Member Lynne K's Avatar
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    Sounds good Tim. Your wife sounds a bit like me in wanting to do everything. It winds my husband up. But in trying to do everything that I can I am looking after him too. He's never been good at managing household things. That's bills, housework and managing time. If he has too much stress he is not pleasant to be near. So it's in both our interests for him not to take too much of a burden until he has to. I'm very worried about that point in time. If I'm unable then to communicate and I'm not mobile he is likely to be in a constant bad mood. I'm trying to prepare him bit by bit. I encourage him to go out to music sessions. His passion is playing Irish Traditional music on his fiddle and with friends. He always comes back in a great mood. I hope that it's many years down the line when the issues I spoke about will be happening.

  10. #220
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    Lynne:
    Given your extremely slow progression your hubby has many years fiddling ahead of him. From what I have read you and he can extract great quality of life for a good while.
    He probably knows Planxty. In my mind the finest Irish traditional group of all time. Andy Irvine's West Coast of Clare is the greatest melody ever written.

    Charles

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