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  • Ellie
    replied
    Good to hear that some progress has been made by your husband MMG It does take time for us to get our heads around the diagnosis and it can be a case of one step forward, then two steps back with the emotions.

    Hopefully the palliative team will be able to offer him some counselling, maybe for you too - your emotional wellbeing is equally important.

    Great idea to go away for a change of routine and scenery - enjoy!

    Love Ellie.

    Leave a comment:


  • Lynne K
    replied
    Originally posted by MMG View Post
    Thanks everyone.

    We have seen the OT today and she has helped enormously, just by talking and acknowledging that it is "normal" to be in shock.

    She has talked about the advance care directive and this has helped.

    Hopefully we may have turned part if a corner.

    We are going away in our caravan for a week tomorrow to our "happy place". Making the most of it while we can.

    We see the palliative care team next week.

    Thanks all of you xxx
    I hope that you have a lovely week at your special place in your caravan and that it helps lift your spirit, Lynne x

    Leave a comment:


  • MMG
    replied
    Thanks everyone.

    We have seen the OT today and she has helped enormously, just by talking and acknowledging that it is "normal" to be in shock.

    She has talked about the advance care directive and this has helped.

    Hopefully we may have turned part if a corner.

    We are going away in our caravan for a week tomorrow to our "happy place". Making the most of it while we can.

    We see the palliative care team next week.

    Thanks all of you xxx

    Leave a comment:


  • Patw
    replied
    Originally posted by MMG View Post
    Hi

    I haven't posted before, my husband was diagnosed in April of this year and this has been the worst month of my life. It is so far, a living nightmare with his mental state being worse than his physical state.


    My husband is now on anti depressants and is so upset each morning that he has actually woken up. We are waiting to be seen by the palliative care team so that he can write his advance care directive.

    There are no silver linings at the moment - If we make it through the day without floods of tears its been a good day.

    We've had so many discussions about suicide (by various methods) and i just hope that the anti depressants improve things so that he can get back to some sort of enjoying life, but that feels so far away at the moment.

    I've never experienced depression before, either personally or in anyone close to me and it is quite overwhelming. The intense and huge sadness is just so all encompassing.

    We have always been very independent of "the system" and now feel that we are so needy and weak.

    Not much help to the original post, but you are not on your own.

    Good luck
    It’s so hard to come to terms with this horrible situation were in but u both will 👍
    today I feel I have turned a corner , I still wanna cry and curl up and hide away but I have put that to the back of my mind now
    and I feel content x be strong and fight x

    Leave a comment:


  • matthew55
    replied
    My progress was slow for almost a year then it has eccelerates(a good example of a word that predictive does not recognize so an extra task is a Internet search. I am actually looking forward to eye gaze. 👍😁x

    Leave a comment:


  • Gordan1111
    replied
    Speed of progression can vary a quite a bit as you'll see from previous posts here. Onset location can make a difference, as can age. (Look at some of the previous posts on here.) OT or nurse might be able to better to tell you whether breathing issues connected or not. x

    Leave a comment:


  • MMG
    replied
    Thank you all.

    neurologist has said he has ALS. we haven't seen the regional specialist consultant yet.

    His symptoms started with his left arm, initially thought to be carpal tunnel and/or compression of nerves in his neck. No use of his left arm at all now.

    Then left foot drop and now his right arm has significantly weakened.

    He is struggling with stomach issues now which is thought to be weakened abdominal muscles which is making life a bit difficult.

    He has been having bouts of breathing issues which might be panic attacks???

    We have been referred to all sorts of clinical teams, OT coming out tomorrow which will be a big help. And we are told he's being referred to a psychologist. No appointment as yet.

    We feel we are being very needy at the moment as we have never been ill before. Although it hasn't been long it feels like a lifetime of waiting at the moment.


    Each day is a little better, but it just feels like all the hope has gone.

    Thanks for confirming that these reactions are "normal" in what doesn't feel like anything normal.

    Leave a comment:


  • Gordan1111
    replied
    Hello MMG. Wish there was something could say that say make you feel better. I've had same dark thoughts. But other people on here do manage some sort of accomodation and remain positive - though I haven't counted myself one of them. Do you know the type of diagnosis? This disease varies a lot. Be strong for all of you. x

    Leave a comment:


  • Bowler
    replied
    MMG right now you both probably feel like you’ve been hit by an express train which is only to be expected. Your comment about “a living nightmare” really resonates as that is exactly what my wife referred to at the beginning.

    Please don’t think the palliative care team are only there to sort out your advance care directive they in fact are a fantastic resource that offer many many supportive services.

    Another great source of support is your local branch of the MNDA. They can often buddy you and the whole family up with a dedicated trained Association Visitor who will help you navigate through the often complex array of medical support available. They can if you wish try and help push things along and so much more. If it would help I am happy to facilitate the first contact. Just PM if you think you might want to pursue this route.

    Above all please know everyone on the forum has experienced much of what you are feeling right now and are standing ready to offer advice and support whenever you want.

    Take Care Phil.

    Leave a comment:


  • Lynne K
    replied
    Hi MMG, what an awful time you’re having. I hope that the ant-depressants kick in very soon. Maybe counselling would help you both too. Your GP might be able to refer you both.

    Has your husband been contacted by all of the local palliative care services (OT, Physiotherapist, Speech Therapist, Dietician and Wheelchair Services)?

    Sending you a big virtual hug 🤗, love Lynne x

    Leave a comment:


  • Mary C
    replied
    Hi MMG,
    really hope the palliative care get in touch soon...or can you contact them to explain your husbands state of mind?and stress the urgency of their support.

    The emotional rollercoaster after diagnosis can be overwhelming and maybe palliative team can refer to a psychologist for counselling support.
    They should also be able to support you as main carer and spouse.

    Your husband is no doubt in shock and fearful and filled with negative thoughts that prevent him getting enjoyment from anything.
    Many people on here talk about acceptance but it takes time and even then there can be low times.
    I hope you have friends and family that show their love for you both.I certainly get a lot of enjoyment spending time with mine.My faith also is my rock but that’s not everyone’s experience.
    With Best wishes
    Mary

    Leave a comment:


  • MMG
    started a topic Husband diagnosed and struggling

    Husband diagnosed and struggling

    Hi

    I haven't posted before, my husband was diagnosed in April of this year and this has been the worst month of my life. It is so far, a living nightmare with his mental state being worse than his physical state.


    My husband is now on anti depressants and is so upset each morning that he has actually woken up. We are waiting to be seen by the palliative care team so that he can write his advance care directive.

    There are no silver linings at the moment - If we make it through the day without floods of tears its been a good day.

    We've had so many discussions about suicide (by various methods) and i just hope that the anti depressants improve things so that he can get back to some sort of enjoying life, but that feels so far away at the moment.

    I've never experienced depression before, either personally or in anyone close to me and it is quite overwhelming. The intense and huge sadness is just so all encompassing.

    We have always been very independent of "the system" and now feel that we are so needy and weak.

    Not much help to the original post, but you are not on your own.

    Good luck

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