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Thread: All becoming real and its frightening

  1. #1
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    All becoming real and its frightening

    Seems we have been in a little bubble and its bursting. Husband was diagnosed in Nov 13 after 12 months, prior to that he had foot drop for a year and balance issues before that. After all this time you think that it is going to be slow and not develop.
    Walking had been awkward but he managed, now he can hardly stand for 5 mins, he is constantly frightened of falling when he walks ,tomorrow he goes for another orthotic brace for the other foot. He has always been very active a TV engineer but had hobbies of car mechanic and DIY, built a new home (sold it 10 years ago) could do plumbing, wiring, shift sheets of plaster and anything heavy no problem. Just doing up our bungalow with the wide doors and everything that goes with the dreaded MND. Today I have been painting all the new doors in the hall, Bill managed to take the handles off for me, but putting just one on this evening was awful, I put a seat in the right place to sit and put it on the handle. He got stressed as he couldn't stand and do it. Then stressed when he went to put the TV on as where I had moved the AV rack the eye had moved and we had no control of the TV ! He couldn't stand and couldn't bend to look and sort it out, oh the frustration. He knocked things over, if he had had the strength he would have thrown something. He ended up falling on the floor, wanting to end it all.

    This is all minor to what many of you go through, how is he going to cope? How am I going to cope? I still work full time, how long am I going to be able to do this?

    Sorry but beginning to get scared by what we are to expect.

    Peta

  2. #2
    Forum Member Jan's Avatar
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    Big hugs to you and Bill Peta, i think this past week or so has woke me up too to what is happening getting more and more difficult to type now and I feel I am getting real swallow issues, thick things don't bother me much but trying to swallow saliva or even a glass of water starts me off on horrendous coughing and sneezing fits. Hopefully the new brace will help him, I was mightily impress with the on he has, good luck tomorrow xx

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    It is truly a dreadful disease Peta, all I can say we share your problems and please keep posting.

  4. #4
    Forum Member Terry's Avatar
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    Hi Peta;

    I often feel like throwing things and have ended up sort of screaming and throwing a fit out of frustration. But it upsets my wife and the stress makes things so much worse for me and her, so as time has gone on I've learnt to stay calmer and try to let things go.

    I'm afraid that he has to set his doing ability very low and just (it's really hard) to let things go if hard.

    Sorry, love Terry
    Last edited by Terry; 22nd March 2015 at 22:44.

  5. #5
    Forum Member Jan's Avatar
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    Oh and ask him to use a walking stick, there's no shame in using it and it might prevent him breaking his hip!

  6. #6
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    Thanks Jan, sorry to hear about the swallowing. The Orthotic brace is NHS this time, we will wait and see, the one he has already we bought privately.

    Look after yourself xx

  7. #7
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    He had been calmer for a long time after the initial shock, think the loss of strength in the hands and the fine motor side is just knocking him sideways.
    Jan he is getting measured for a rollator and wheelchair


    Thanks Peta
    Last edited by Reta; 23rd March 2015 at 15:12.

  8. #8
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    Reta, don't take any chances with him falling. Over the last month, I am tottering about, wobbling around and I too am frightened of toppling over. I have brought my rollator indoors and I am using it for support, which is much better. I get frustrated because I cant walk far, cant stretch, cant reach, cant pick things up off the floor, have trouble putting trousers and shoes on..............the list goes on.
    Today, for the first time I went to church in the wheelchair which shocked the congregation because I always said I would fight it as long as I could. Well, this week, I have recognised my limitations! Ask an OT to come round and do a review of what adaptations you need in the house. If you haven't already done so, get referred or refer yourself to the local hospice, They are full of good advice. And, finally, if you are leaving him alone in the house, get a careline alarm in case he does fall down when he is on his own. It is scary - just got to look ahead and put things into place, I reckon. Much love Joycie

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    Thanks Joycie, I think he needs to go back to the hospice they ring him monthly to see how he is. He has someone with him two days a week working on the bungalow and he picks our granddaughter 's up one day a week, he can drive better than walk. Hopefully another couple of weeks I will finish the decorating then I can setup an office in the hall with a printer, then I will work from home more. I Tell him to keep his mobile with him at all times.

    Peta
    Last edited by Reta; 23rd March 2015 at 15:16.

  10. #10
    Forum Member Jock's Avatar
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    My suggestion Peta is to read up on what's coming and prepare by keeping a step ahead. As for the frustrations it's a matter of mind over matter.Hopefully with time your husband can focus on what he can do and less on what he can't do. With there being no cure it seems a pity to waste our remaining time negatively.

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