I am seriously considering taking my own life as I have discovered that if you need help and no one understands you, the question becomes 'why should I continue living as an ignored person'? Would you?
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Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxx -
Matthew, hang on in there mate. Iβve messaged MNDA asking if they can help you in the situation you are in. You can boxxock me later -
Good luck with that they don't like me muchBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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Matthew your message box is full. Please delete some stuff so I can contact youComment
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Hi Matthew
I've just sent you a private message
Best Wishes
Rachel
MND Connect AdviserMND Connect
Contact us on 0808 802 6262 or at [email protected]Comment
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I have repliedBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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Has anyone tried to to tell a hospital consultant that they have made an incorrect decision?Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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Hi Mathew we need you on this forum my friend. You make me laugh with your straight down the line approach. If I could Iβd like to talk to u in private?Comment
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Talking is the last thing I wantBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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Ok Mathew whenever your ready pal ππ»Comment
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Have you tried involving Patient Liaison (PALS)?
You could 'accept' things as they are now and go home, take it from there? xxβDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user.
βComment
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I am at home they were happy to get rid of me. I have a meeting with the incompetent consultant tomorrow pmBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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Try involving anyone on a SundayBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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Matthew, I understand your thoughts of wanting to end it all. Under the circumstances I think itβs not surprising. I have also had those thoughts at times, but something has stopped me. I donβt think Iβm brave enough to take that step. I hope you wonβt be too brave either. Remember, you are more than MND. With love , Lizzie xxComment
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The thing that would stop me is recognising the carnage and grief I would leave behind. I couldn't do that to the people left behind. I am speaking from experience I still question myself whether I could have changed their decision and it haunts me. I wouldn't have the courage but I do understand because when I have bad spells I can understand why people have dark thoughts.
I am glad that you are home x Sarah xx
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