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How do we deal with deterioration

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    How do we deal with deterioration

    My wife has been diagnosed about a month ago.

    A few days ago, she told me that she wants to cry but cannot. I can see the sadness in her eyes. It appears she cannot show emotion. Is this "normal"

    She used to suffer from terrible Hay fever, now there is no sign of it. Also, saliva disappearing, and speech difficult, sometimes hardly audible. This is obviously all new to us.

    She has difficulty with her walking and tires very quickly.

    #2
    Mitcheak so sorry to hear about the deterioration of your wife, and the early hours of the morning I find are the bleakest to think about these things, I find. I suppose your wife will go through her feelings and grief about it all in her own way and at her own pace, maybe too shocked with it all at the moment. It must be so difficult for you to witness it all. Sending love and hugs to you both, Heather x
    Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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      #3
      I agree with what heather says and I think the emotional side and the deterioration is different for everyone so it would be hard to say. Must be so difficult for you too.

      I hope you find some comfort from this forum. We are all here for you.

      Love and hugs
      Denise xxx

      when i can think of something profound i will update this.

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        #4
        I agree with all that is said above.

        I have to say I do cry.

        We have some amazing groups on here. We have all had very different diagnostic journeys.

        There is a hug group which lots of us pop into.

        There are groups to answer all sorts of practical questions.

        The favourite group of mine is the cake, biscuit and desert corner.

        Love the excuse of having to keep my strength up

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          #5
          It's perfectly normal in the beginning, that total shock, dream/nightmare feeling with utter disbelief .

          When you finally start to get your head around the diagnosis, deterioration can knock you back down.

          Our normality has changed. I never thought I would get my head around this horrid disease but like most things in life you adjust somehow .

          I found strength in reading the posts here , knowing we are not totally alone.

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            #6
            Thank you all. I do not always get the chance to get to the forum, but will try and include it in my daily routine. Still finding my feet around the forum. Appreciate the helpful tips.

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              #7
              I’m so sorry this is happening to your wife Mitcheak. As denise says, everyone’s MND is different and it’s best to find a way of dealing with this that is right for you. As others have said, there is so much support in the forum, which is a real comfort.

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                #8
                Mitcheak Now I have to work out what cake to have with my coffee.

                I have also been so bold as to ask for different flavours for for Altraplen suppliment on my prescription. You see, pushing the boundaries .

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                  #9
                  I found the initial diagnosis period for my Dad to be the hardest thing so far as he was devastated. There was no hope of improvement or a cure. However over time you do come to accept the diagnosis in your own individual ways. My way is to accept I can't fix him but I can support him and try to get him the best care throughout.

                  There have been tears along the way (18 months since diagnosis) (both his and mine) and I find each significant progression hard to cope with. But each time we dust ourselves down and adjust and keep on keeping on as positively as we can.

                  Sorry for your wife's diagnosis and the difficult period that follows. Hopefully this forum will provide a good source of information and support.

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                    #10
                    Mitcheak You asked, How do we deal with deterioration


                    Personally I found that "dealing with" physical changes is easier - (not that anything about MND is easy) - when I have gadgets or gizmos which enhance my ability to continue doing as much as I can.

                    For dealing with the emotional side of physical changes, I highly recommend counselling, which helped me enormously. xx

                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                      #11
                      Mitcheak sorry for your wife’s diagnoses. It is so daunting at first for all of you. I felt I was in a daze for months(it’s my husband who has MND diagnosis 5 years ago) you need time to adjust and you will adjust. Often you notice a deterioration and it’s panic stations then it can seem to reach a plateau for a while when you get back some strength to carry on.
                      Try to use the forum as often as possible. You can ask anything, have a moan, have a cry and also a laugh. Take care of yourselves at this hard time. xx

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