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  • Ellie
    replied
    I'll PM you Jaxx x

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  • Jaxx
    replied
    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

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  • Guest's Avatar
    Guest replied
    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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  • njm
    replied
    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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  • Guest's Avatar
    Guest replied
    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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  • Ellie
    replied
    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.

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  • Ellie
    replied
    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.

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  • marge
    replied
    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.

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  • Jaxx
    replied
    Hello, Cc thank you for your support, I agree everyone has their opinion and their own mind set on how the they deal with and live with this disease, again Ellie I’m happy for the way you seem to be dealing with things, I must stick with my own opinion and stress it is my opinion of what I think of this disease and how it is and will always affect our immediate and extended family and Jens friends.

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  • Dan
    replied
    After reading previous posts I feel I would like to add to the debate.
    I have familial MND and am the 5th in my family to inherit this disease. My sister was diagnosed in the same week as me 4 years ago. She found this very difficult to accept and became angry and bitter.She died 2 years ago.
    From the beginning I accepted that there was nothing I could do about my diagnosis and decided to make the most of my life. I do not think about dying...and simply enjoy what I have...two beautiful daughters and 3 precious grandchildren . This disease has not destroyed everyone it has touched because I do not want it to! Despite my very difficult situation I am happy and refuse to accept that my life is over.
    I think Ellie is amazing...so incredible helpful and knowledgeable about MND and I am sure she provides a loving and positive atmosphere for her family and friends. I think it’s all about acceptance....with it comes a certain peace!

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  • njm
    replied
    Originally posted by ccinjersey View Post
    So did I Ellie, I really did.

    We could debate this back, and forth, but its not going to change your view of it nor mine, so best we leave it be.

    CCxox
    I am a massive fan of Ellie. I am humbled by her optimism and determination to extract happiness from a diabolical illness. I will forever be moved by her fortitude. However I too don't share her courage/fortitude. I too often feel I have been robbed by this disease/my wife has been destroyed by it/my ability to be a husband and father has been destroyed by it/my ability to be a professional man has been destroyed by it. Some mornings I feel things have changed not been destroyed. Other days I feel things are different not destroyed. I am 'bipolar' in my mind. I flop between the two positions.

    Regards

    Charles

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  • Guest's Avatar
    Guest replied
    So did I Ellie, I really did.

    We could debate this back, and forth, but its not going to change your view of it nor mine, so best we leave it be.

    CCxox

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  • Ellie
    replied
    Oh boy CC, I tried. I really did.

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  • Guest's Avatar
    Guest replied
    Hi Ellie

    I would definitely agree with you pertaining to my best friend and the choices she made living with mnd. Those choices did indeed in effect destroy so much if not all effected by it, and fair to say it was her choices and not the illness.

    I have said it before Ellie that You, Terry, Barry and sooo many other forum members living with this illness show others, as well as new members by example, your threads, and posts that although changed life is still worth living, and with so much to live for.

    That was not my point about thinking it was not a 'wild' statement, and certainly not 'disingenuous' in my opinion as you stated to Jaxx. No one can presume to assume what another is emotionally, and mentally feeling, and experiencing when being affected by this illness.

    To state to her that what she expressed she is feeling over watching her daughter's struggles, and challenges now, and how it is effecting their family as a 'wild' statement, and 'disingenuous' dismisses what she is feeling as not acceptable, and false when in fact it is not if that is what she sincerely feels.

    That's my point, and opinion why I believe it is not a wild statement made, but simply what Jaxx feels at this point in time. I am not going to presume to speak for Jaxx it was just how I viewed her post, and your response to it, and being we all are entitled to our opinions as well as all should be respected, I expressed mine.

    CCxox
    Last edited by ccinjersey; 6 August 2018, 16:08.

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  • Lynne K
    replied
    Well said Ellie, Lynne xx

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