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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

    Comment


      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
      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.

      Comment


        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 Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

        Comment


          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

          Comment


            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.

            Comment


              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 Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

              Comment


                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
                I’m going to do this even if it kills me!

                Comment


                  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.
                  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.

                  Comment


                    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.
                    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                    I'm staying positive and taking each day as it comes.

                    Comment


                      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

                      Comment


                        Hi Charles. You have hit the nail on the head. My husband also plays in ceilli band with Mike Harding and friends. I join them in Settle sometimes for the Thursday evening music session. Steve, my husband plays in Manchester two or three nights per week. He does jigs, reels, hornpipes and accompanies the occassional singer.
                        ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                        I'm staying positive and taking each day as it comes.

                        Comment


                          Lynne:
                          I grew up in Cape Town with an Irish mother. My brother and I had a band called Liffey Banks. We did a pilgrimage in 1981 (and watched Offaly beat Kerry at Croke Park) to the west coast of Ireland and spent several weeks at Lisdoonvarna soaking up the music and the Guinness. In hindsight my first signs of MND were I could not strum my mandolin with normal fluidity. I knew there was something wrong when I found my arm shaking when lifting a glass of the black stuff to my lips.

                          Let your hubby fiddle on my behalf

                          Charles

                          Comment


                            Sure will pass on your message to my hubby. About losing musical function. I was learning to play the fiddle for 4 years up to 2014. I taught myself how to read music in the first 6 months. I did not play much after I started teaching people to drive August 2014. I finished doing that at the end of January this year. I got my fiddle out yesterday, tuned it then tried to play a familiar tune (Slockit Light - probably spelled wrongly). I could not hold the bow successfully because of my weak fingers on my right hand. I haven't given up yet. I'm going to see if I can hold the bow successfully in an unorthodox way. I'll let you know how I get on.
                            ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                            I'm staying positive and taking each day as it comes.

                            Comment


                              Originally posted by Terry View Post
                              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.
                              Had it ground down smooth this afternoon, so first meal just eaten. And I had a drink of water on the way home. I could not swallow without it cutting my tongue but it's now painless, well almost.

                              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.

                              Comment


                                That's good to hear Terry, and what a relief for you

                                xox

                                Comment

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