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Pupkin55

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  • Guest's Avatar
    Guest replied
    Hi Terry
    You certainly are going through a bad time , but we know this disease is no picnic ! One thing after another it is relentless and I am only about a year into it .
    You seem to have a great attitude and are very positive outlook, and help everyone on this forum .
    I wish you all the best and hope the latest things soon get resolved.
    Keep smiling and take care
    Love Chris

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  • Guest's Avatar
    Guest replied
    Hi Chebs,
    Having each other, especially now is so important, are you suffering from emotional liability too ?, Only ask because the wife suffered badly, crying at the least little thing and was given citalopalm which has worked wonders for her .
    I hated doing Mary's bucket list, it seemed to make everything become real instead of just a bad nightmare that you wake up from, for me personally it was when she said she didn't want to be resuscitated that this nightmare of a disease really hit home . Have you had a peg or rig fitted yet ? Whenever I'm here will always listen or chat and try to help as much as I can. Be strong and do all you can together while you are still able to function
    Best wishes and support
    Tim

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  • Terry
    replied
    Hi Chebs;

    I always list or write the things that I want to ask people, it takes the pressure off of talking etc. One thing is, if you give a A4 sheet to most people to read, they scan it and don't answer most of your important points, so I fold the sheet up and stick to one point before I let them see the next or print several sheets with separate points on them.

    It would be probably good for you to take a recording device in with you to record everything. You will have to say to them why etc.

    Love Terry

    PS:- Dentist appointment 21st May unless I can't eat or it is painful

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  • chebs
    replied
    Hi Tim,
    so sorry to hear it's your wife that is suffering. As you say my husband is trying to deal with me and also his emotions. This is not easy but at least we have each other and we can support each other..
    It was about the same time as yourselves that we were told I had Dementia, and told to do my bucket list!! Then early this year possible form of MND as well... still ongoing prods and pokes, it is draining...
    Anyway, thank you for answering my blog and hopefully we can support each other
    Regards to you both
    Chebs x

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  • chebs
    replied
    Hi Terry,
    Oh toothache, not nice.. hopefully your sorted now and carry on enjoying your dinners.
    Its nice to have this forum to rant and to know we can support each other. I know this is a long process just hard to keep repeating myself especially when I have trouble with my speech, then when I leave appointment I remember something else thats been happening.
    Anyway, nice to talk again
    Chebs xx

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  • Guest's Avatar
    Guest replied
    Hi Chebs,
    You have your rants, believe me I've had a few since the wife was diagnosed with mind In october of last year , as I'm sure everybody on here at one time or another has, to be told you have any form of mind is a hard knock to take, it's a cruel, horrible disease, and there are people on her who will listen and try to help if they can, me included even though I'm really still learning myself, you get to much information to process it all, this site helps there too.
    Have all the rants you want, it sort of relieves a little of the release of the mixture of emotions you are going through and hubby is probably suffering as much as you are at the moment.
    Take care and visit here when you need a rant or advise always someone who can help
    Tim

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  • Terry
    replied
    Hi Chebs;

    Tiredness and bad news days do make us deflated.

    Since christmas my Mnd seams to have progressed quite a lot probably due to two bad coughs and a virus, plus two quite bad backs for a week each.

    Still I have been getting my spirits up until about a week ago my tooth had a great pain and a few days after that I had my toe nail cutting into my toe. Still went to dentist yesterday and he cured the problem, well until half way through my dinner that night.

    Been to doctors this morning and he gave us some cream and has forwarded my towards two different specialists.

    So a bad year so far, still we have to live and keep going with a smile, I guess.

    I know I'm not anywhere as low as you Chebs.

    Hugs Terry

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  • Guest's Avatar
    Guest replied
    Hi pumpkin
    I hope and pray that you have this horrible disease and you need to go through all the test, get the results first then you will know what you are dealing with and can act accordingly, I have my fingers crossed and will pray that the results come back as something simple like trapped nerves, but with the symptoms you describe it could be anything. Get the results and then hopefully that will free your mind of worry
    Thinking about you
    Tim

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  • chebs
    replied
    Hi anyone,
    I'm feeling so alone, husband great and family, but went to my meeting expecting results of all the tests, instead was broken, crying and very upset...feel like a fraud...
    Having firstly told by one neurology consuItant I have Dementia(FTLD) then told by another not sure it's that type. Also, was told likely PLS form of MND,Now told possible MND, maybe something else!! 4 years!!! I can't take much more, I know it could be better outcome though the pains,crasps, stiffness,balance,drooling and fatigue, then on top short term memory.
    I went to a coffee morning today, didnt want to go, but was quite informative, they have advised me to go for a second opinion??
    Sorry, but all I hear is Cancer!!! what about us!! MND (maybe suffers)
    I'm fed up of keep telling my medical history, feel like I should carry a plaquard with details round my neck ( not practical at mo, too painful) Oh well, maybe this rant will help, but tired and numb from it all today, just want to stay home and let the world go by.
    Regards from
    " A deflated Chebs" x

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  • chebs
    replied
    Hi Pupkin,
    Great news about the hospital appointment!!
    I too have a important appointment on Tuesday with consultant etc to see what else is going on with me?? Also, get to meet a Doctor of MND too.
    Just another thought,maybe see about getting an automatic car, so you stay mobile...
    Keep us informed!!!
    Take care
    Chebsx

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  • Terry
    replied
    Hi Pupkin;

    Sorry to hear about your continuing problems and the driving but it's good that you are have a hospital appointment on Wednesday.

    Love Terry

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  • Guest's Avatar
    Guest replied
    Hi I've got my appointment for this weds at the hospital I had doctors appointment yesterday as I'm really struggling with my feet last few days and all about given up with my driving I find it too much hard work , so we did some new motor skill tests and he said my co ordination isn't quite right when walking so hopefully I can find out something or at least start the process alot quicker now, best wishes to everyone xx

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  • chebs
    replied
    Hi Pupkin,
    Just a quick thought might be worth asking to go on the "cancellation list" ?? most clinics have them. It costs the hospital if appointments are missed, so they'd rather fill them. (I use to work within the hospital environment)
    It may mean any day or time,but worth an ask... Just a thought
    Take care
    Chebs xx

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  • Guest's Avatar
    Guest replied
    Thank you all for your kindness , yes I will do that let u know , I wish all of you lots of love and best wishes and Thank you all for taking the time to reply .

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  • chebs
    replied
    Hi Pupkin,
    Good luck and keep your chin up.... Let us know the outcome, hopefully you won't have to join us MND sufferers! fingers crossedX
    best wishes
    Chebsx

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