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Thread: Celebrate the GOOD THINGS

  1. #131
    Forum Member Lynne K's Avatar
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    Nov 2017
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    Only just read your message Barry. I'm very sorry that you were blown over. I won't walk to our car down the sloping path if there's any wind because I can't keep my ballance. So those days are wheelchair days. I hope that your pains ease quickly and your confidence returns. Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  2. #132
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    Welcome home Dina, I am sure you will settle down in a few days. Try and rest up when you can

    Sheila x

  3. #133
    Forum Member Kayleigh's Avatar
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    Hi Dina,

    It good to hear that you came home from hospital, as planned.

    I'm very glad that you are back home. This little guy is beary happy too! - in fact, he is so happy you are home, he is ....

    http://https://m.youtube.com/watch?v=hQhznpAieOM

    Take care and keep warm & cosy.

    Love and hugs,
    Kayleigh x

  4. #134
    Forum Member Ellie's Avatar
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    Jeepers Dina, don't apologise!!!

    Hopefully you can relax a wee bit over the next few days and get good quality sleep.

    I know how hard, tiring & frustrating it is to have to explain things to every single carer - at least I could type out my famous step-by-step instructions (I know you're waiting for assistive technology) - and I hope you have the energy to get through the start up period.

    Sending you positive thoughts and a big hug!

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  5. #135
    Forum Member Sueb's Avatar
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    So sorry to hear about your fall Barry, glad you are ok. Hopefully will see you at 2Thursday in November.

    Glad you are home Dina. Steve came home last week. It’s tiring being home after a stay in hospital. We are getting used to the carers to and they are learning about what Steve wants, but it is awkward having them here especially at night time. The only good thing is I get to sleep which helps with the days..

    We are going to Rainbows Hospice in Loughborough on Thursday to a study day about respiratory knowledge in Neuromuscular conditions. Steve is going to talk for 10 minutes about using his nippy machine from a patients view.

    Sue

  6. #136
    Forum Member Gillette's Avatar
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    Thanks Ellie

    Unfortunately I have a very busy week, which is nuisance as I have an important speech to write for Sunday. Itís my younger sonís wedding and, with my eternal thanks to the CHC for their contribution, I cannot go to the wedding. I knew it would be really challenging to organise getting there but the delay in leaving hospital made it impossible.

    Rant over. Iím feeling sorry for myself and my younger son tonight, as well as thoroughly fed up with MND.

    As for todayís good thing, I think it must be snuggling in bed with my emails.
    Dina

    Trying to keep positive, but not always managing.

  7. #137
    Forum Member Gillette's Avatar
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    Great news that Steve is home, Sue.

    The study day sounds good. Well done to Steve for agreeing to give a patientís perspective.
    Dina

    Trying to keep positive, but not always managing.

  8. #138
    Forum Member Ellie's Avatar
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    Hi Sue,

    I am also happy to hear that Steve is home with you.

    My husband found it very intrusive to have carers in the house and it took a while for him to get comfortable with their presence (in his house) To be fair to the carers, they do try and melt into the background. I found myself caught in the middle, so to speak, but we all found an equilibrium.

    I'm glad you're getting much-needed sleep.

    Good on Steve for taking part in the respiratory teaching day.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  9. #139
    Forum Member Terry's Avatar
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    Hi Dina;

    Glad you're home and thought that things would be extra hard for you to start with. Hopefully you will get the same carers who will understand most of the things you want.

    It's a good idea to have some instructions written down. When I used to stay in the hospice for a week I had to do that because I could not talk. You find most people just scan it and then do what they think and in any order. The last time I went in, I put "please read each bit out loud so I know where we are", at the top of each set of instructions.

    One evening they sent in a African woman that was there as a standby because they were short staffed. She said please let me help you in broken English. She had difficulty reading basic English, so to be asked to read it out aloud was unfair but she done it. I have the greatest admiration for her, it took a couple of hours to shower me and get me to bed because of communication and my problems but we both enjoyed it and felt good afterwards.

    Sorry to hear about you and your son's wedding. That is so hard on you.

    Love Terry

  10. #140
    Forum Member Ellie's Avatar
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    That's just horrible, Dina. That whole CHC process and its delay has a lot to answer for

    I am sorry you're having to miss your son's wedding and hope you can watch some of it on streaming.

    Take care.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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