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    #31
    MND certainly throws up plenty of emotions and life challenges,am sure none of us would disagree with that.
    However,how anybody deals with the diagnosis and subsequent health problems is really very personal.
    As a carer I have a totally different perspective to my husband, partly because we have different aspects to our personalities, but mainly the differences are that I am not him.I am not experiencing anything that he does in exactly the same way, equally he does not experience my emotions when I am watching and caring for him.
    When I first visited this site(probably immediately after his diagnosis)I was extremely frightened, some of what I read did not help, some did.We had no information given to us by the Neurologist and it was weeks before we heard anything from OT or Phyiso.
    I am sure I am not alone when I say we scoured the web for info, got very very scared, stopped looking and starting working out what we were going to do.
    We do not go to the hospital, we see our GP if we need anything.Community nurses also help.
    Obviously I still visit here but I often find somethings rather "sanitised".I accept there is a balancing act because not everybody is the same, however,should we just ignore or not accept those who are not quite as upbeat as others.Anger is very destructive but are we not entitled to be angry? I often find I have very little control over my emotions and anger is just another one.For some, the death of their loved one is the end of their world, and for me, watching what is happening to my husband is coming pretty close.Do people want to read that? Pretty sure if they are here on this forum they are pretty close to feeling that anyway.

    MND is not an incurable disease ,it is an underfunded disease.

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      #32
      Hi Marge,

      I agree with you that there is a degree of sanitisation on the forum - maybe it's the often spoken of "British Reserve"?

      I, for one, would like to post of my own decline - by that I mean my last few weeks - if I am physically able, as I think it would be useful (stupid word??) to some people. Naturally, it would not be to everyone's taste.

      Marge, I know you'd get nothing but support if you were to post of your husband's decline. Wives, husbands, partners have done it in the past and it has been a privilege to know they wanted to share this most intimate part of their loved one's journey with us.

      Big hug to 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.

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        #33
        Oh Jaxx, I never questioned the impact your daughter's MND is having on your family.

        I know from reading other posts you've made that all of you are still struggling to come to terms with Jen's MND, which is why I gave my and my family's positive experience of having counselling - I cannot speak highly enough of how it helped us all.

        As we all know and have said, the diagnosis affects us all differently - that is why I disagreed with your use of the word "everyone", a discussion of which is closed.

        I sincerely hope you can all find peace, especially Jen's eldest.

        If you or Jen want to contact me to see if my own kids' experiences could help you in any way, please do.

        Love Ellie.
        ​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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          #34
          Which was exactly my point Ellie.

          Jaxx was stressing it's in 'her opinion' therefore it does not need to be labeled 'wild or disingenuous' if that is a person's heartfelt view of it, in my opinion.

          I was never disputing about quality of living with this illness.

          CC xox

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            #35
            Guys:

            My point is that I fluctuate wildly day to day and within days. If I think of what I have lost spiral into despair. Other times, when I focus on the present, I am peace. I can fully understand a young mother and her loved ones feeling devoured by a monster. For each of us it is a roller coaster of emotion, perception and mood. I admire Ellie who, despite at very debilitating stage of MND, an rest with a fixed position which is bouyant and happy. I, for one, do not have that psychological and emotional stability. I can have happy moments but too can have many dark, despairing and nihilistic moments.
            Charles

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              #36
              Hi Charles

              I sincerely hope you have more good days then bad, and wish you much comfort, and strength in your darker moments.

              Much love
              CC xox

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                #37
                Ellie, I would be very interested in your children’s experiences, I appreciate her baby may never remember her but her 8 yr old wishes everyday her Mum would get better. X

                Comment


                  #38
                  I'll PM you Jaxx x
                  ​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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