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  • Kayleigh
    replied
    Dear Terry,

    You are a brave WARRIER - not a wimp! Every day you summon up enough courage and bravery to deal with all the tough challenges that life throws at you, as well as being supportive towards others affected by MND.

    I'm sorry that you feel down and I'm sad that you feel like you are a wimp.

    When we lose our ability to do things it doesn't make us a wimp if we find it difficult come to terms with how these losses can change and impact everyday lives.

    You have been coping with MND for many years and you always put up a very brave fight. You are entitled to have a rant and a meltdown about things, just like we all are, especially when things are particularly tough and the decline in our health can seem so relentless.

    You are being as brave and as strong as any man or woman could be - so please don't think of yourself as a wlmp or needing to man up.

    I am glad you were able to get out and about yesterday. I hope you feel much better today.

    Love
    Kayleigh x
    Last edited by Kayleigh; 30 January 2020, 12:11.

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  • nunhead_man
    replied
    Good morning Terry

    I'm sorry to hear you sounding so dispirited.

    My two pennies worth is that modern floorstanding hoists are quite easy to work if you have the space and somebody is trained to use them - it does not take long.

    I remember using one for my father-in-law who had Multiple Sclerosis and him laughing and chuckling as we swung him from his wheelchair into his shower and vice versa - he'd been a great aficionado of Ferris wheels et cetera in his youth

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  • Barry52
    replied
    Hi Terry,

    You are not a wimp and you have been fighting this disease for over 8 years. I’m not surprised you are feeling down following your recent hospital stay. Please don’t give up yet as you have always been encouraging to other members here. We know from comments on this forum that care homes are ill equipped to deal with MND but I understand you are thinking about how your wife is coping.

    Is it possible to get some care in your home? You may find this a better solution in the medium term.

    Love,
    Barry

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  • Terry
    replied
    Hi Ellie,

    I have been very affected by everything recently, so much so that I can see a daily decline in my abilities.

    I will have to be feed soon as my fully functioning arms at the beginning of November work less and less.

    I guess that I should man up but I don't think that my wife can cope with hoisting etc.

    I don't plan to go into a nursing home but I don't think that I can take anymore.

    What a wimp.

    Love Terry

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  • Ellie
    replied
    Terry, am I reading you correctly in that you may be going into a nursing home???

    Glad you slept better and got out today.

    Love Ellie.

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  • Terry
    replied
    Yes, sleeped quite well and been out today. Have quite a lot of pain in neck and shoulders and my arm movements and strength is poor.

    Can't see myself improving and see a nursing home very near. I don't think that could do a nursing home but hopefully I feel some strength and not so much pain.

    Sorry, love Terry

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  • Kayleigh
    replied
    Hi Terry,
    I hope last night was a much better night for you and you managed to get some sleep.

    Love,
    Kayleigh x

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  • Terry
    replied
    I got my days mixed up which is just as well as I had a terrible night;

    Hope tomorrow is nice and sunny as well.

    Love Terry

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  • Barry52
    replied
    Hi Terry,

    I hope you are up to going out with “granddad” today. Beautiful sunrise here this morning and I expect it is the same in Suffolk. Enjoy your day and give my best wishes to Richard.

    Love,
    Barry

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  • Kayleigh
    replied
    Hi Terry,

    I hope the painkillers the GP prescribed work well and you don't have to wait very long to have your first physio appointment.

    I hope you get a good nights sleep and hopefully you can have a pain-free trip out with Grandad tomorrow.
    I hope it won't be raining again tomorrow but if it is there's always Costa's!

    You always bring a ray of sunshine to the forum and I wish there was something I could do to brighten your day and take your pain away.

    Sending you lots of love and get well soon hugs. Please give Grandad a hug from me - but only if your back is up to it!

    Love
    Kayleigh x

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  • Guest's Avatar
    Guest replied
    Hi Terry

    Hope you can get the proper care you need, and quickly.

    Big hugs and much love sent your way xoxo

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  • slp
    replied
    Isn't it wonderful to see signs of spring and when the days start to drag out you know that you have nearly got winter behind you. Although I see that there may be snow on the moors tonight

    I hope that the early snowdrops survive

    Love Sarah x

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  • Ellie
    replied
    Thanks for the update Sarah.

    Good to hear you're finally sleeping better and getting stronger and also people are keeping an eye on you!

    I am good, thanks for asking. There are signs of spring in the garden and it's not dark at 4.30pm any more - woohoo

    Love Ellie.

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  • Ellie
    replied
    Oh Terry, it breaks my heart that your back is so painful

    I hope you don't have to wait long for the physio and that, when you do get there, he/she knows what they're doing !!!

    Don't forget that Codeine will probably slow your bowels, so get in an extra box of Movicol

    Sending you a big hug and hope you get out with Grandad very soon.

    Love Ellie.

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  • slp
    replied
    Hi Ellie

    I am really fed up with it but I am more concerned about being on so much imodium every few hours every day but my GP (who is brilliant and comes to the house regularly ) and my dietitian who has been involved from the beginning both say that I have to stay on the high dose for two weeks and then gradually reduce the imodium and see what happens.
    If I am honest I think that I will be back to the beginning but at least at the moment I have no diarrhoea and oramorph is letting me sleep and I am getting stronger.
    I did watch the programme with Steph McGoververn and I am taking probiotics so maybe that may help.
    I have tried 5 different peg feeds and I don't think that it is food related.
    All rather frustrating but I am sure that we will get there !
    I hope that you are keeping well xx

    Love Sarah xx

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