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    #16
    Sorry it’s my 33year old daughter who was diagnosed last Sept just 4 months after having her baby.

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      #17
      Ah, I understand now. Yes we chatted about travel insurance before I think didn't we? How is she/they doing may I ask?

      Jo

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        #18
        Hi Jo, her speech is quite bad now so she gets very upset when she can’t get out what she’s trying to say I think the speech therapist is sorting something for her to use. I get so upset when I see young Mums out and about pushing prams and playing with their children. She does take the baby ( he’s 14 months now ) to nursery on her knee in her power chair. This disease destroys everyone it touches. Thanks for asking.

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          #19
          Originally posted by Jaxx View Post
          This disease destroys everyone it touches.
          Actually Jaxx, that is not true and quite a wild statement to make.

          Having an MND certainly CHANGES things for those diagnosed and for our nearest and dearest, but it's disingenuous to say it DESTROYS EVERYONE.

          I'm sorry both you & your daughter are still really upset about her diagnosis. I found counselling helped me enormously and my kids (aged 3 & 5 at diagnosis) had 'counselling' - play therapy - and have spoken to counsellors over the years. My husband & I also had a session on how to deal with emotions & questions the kids may have.

          I've been in a wheelchair 10yrs, haven't used my own voice for 9yrs, but like many others, my family & I live a happy life. Does it have challenges? Sometimes, yes, what family doesn't?!!

          All the best,

          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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            #20
            Hello Ellie, I’m happy that you and your family are living a happy life, for us that has not and never will be the case again, our whole immediate and very close family are all still very devastated by this therefore all their lives too are affected, I appreciate your opinion which you are very entitled to but I stick with my description of how it has affected us.

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              #21
              I disagree, and don’t think it’s a wild statement to make at all.

              People handle things, and cope with life threatening illnesses differently. I’ve witnessed it first hand with my best friend, and her family on how they managed it all from the start, and believe that people have different perspectives about it.

              As a mother I can see clearly how, and why she feels it’s destroying everything it touches.

              I hope you, and your daughter can find comfort, and peace of mind in all the changes that are effecting your lives Jaxx.

              CCxox

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                #22
                Thank you so much CC x

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                  #23
                  Hi CC,

                  I’m sorry your friend and her family are struggling so much. You’ve told us she has refused all interventional aids, which must make it extra difficult for you all.

                  You always kindly welcome new members to the Forum and say: “You’ve come to the right place for support and advice…”. It was the many new members I had in mind when I reacted to the statement that “This disease destroys everyone it touches” – it said everyone, not some or a few, but everyone – and I would not have wanted any new member, or anyone, to think their diagnosis would inevitably destroy everyone around them, as well as themselves, which would cause them needless anxiety.

                  I don’t believe you’d want members to feel like that either, as your posts overall tend to be upbeat and offer hope. Yes, of course people handle a crisis differently, but again, it isn’t the case that if you have an MND everyone will be destroyed. I can only hope that you understand why I don’t want people thinking they and their families are doomed, which is one of the reasons I wrote the post (the other reason being to offer advice and support to Jaxx)

                  I’d like to reiterate to new members and to the silent majority of Forum users that, whilst an MND diagnosis is certainly devastating and life changing, it does not inevitably destroy everyone.
                  There is still life to live, love to give and receive, laughter to have, places to go, people to see.

                  Living with an MND is challenging for sure, but I’ve had the privilege of meeting so many inspirational people with MND and equally inspirational family members, including kids, as well as inspirational Forum members to know that MND changes lives, but by no means does it destroy every single person it touches.

                  The only things guaranteed to be destroyed by an MND are the motor neurons themselves…

                  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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                    #24
                    Well said Ellie, Lynne xx
                    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                    I'm staying positive and taking each day as it comes.

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                      #25
                      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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                        #26
                        Oh boy CC, I tried. I really did.
                        ​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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                          #27
                          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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                            #28
                            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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                              #29
                              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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                                #30
                                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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