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Thread: Going downhill

  1. #1
    jay jay
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    Going downhill

    Hi things seem to be going downhill for me now.since being diagnosed in June last year with bulber things have progressed quite slowly although lost voice and had peg fitted have been quite stable for few months however the last few weeks everything seems to be happening first throat infection now chest infection so on antibiotics.then yesterday had my first fall in hallway at home lucky didn't hurt myself.now my left leg feels really heavy and when getting into car today had to get hubby to lift my leg in as just couldn't get foot up enough.Is this normal progression to suddenly go downhill this quick.Sorry for long post just feeling bit sorry for myself
    Jen

  2. #2
    Forum Member Terry's Avatar
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    Hi Jen;

    My progression is normally quite steady but I think antibiotics does speed things along. I have not heard any one else say this.

    Others progress it peeks and troughs, lets hope that your is like this and you soon stop declining. I can't lift my feet up much.

    Try to keep safe and not fall.

    I think most of us feel sorry for us and our loved ones from time to time.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

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  3. #3
    Forum Member lorret's Avatar
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    Hi Jen, Tom was diagnosed in March 2015, his progress was slow then he had a fall that wasn't bad but he couldn't get up without help. Since then his right leg seems alot worse he says he cannot feel it touching the floor. He is getting a wheelchair, he had a trial in one which he seemed ok in (I'm getting steel toecap boots).
    Lorret

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

    Get him steel toe capped boots and shin guards as well. I have experience of woman's driving.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  5. #5
    Forum Member Ellie's Avatar
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    Hi Jen,

    Sorry to hear you got a chest infection too. I don't know about antibiotics speeding up progression but any infection will knock the stuffing out of you and recovery to where you were can take time.

    After an antibiotic, I always suggest taking a Yakult (or similar) for 10 days minimum.

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

  6. #6
    jay jay
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    Thank guys for your kind messages I have the ot and physio coming tomorrow so will ask about equipment then.At the moment I just have a stick and am a bit reluctant to have anything else don't think ready for chair yet but maybe a rollator or similar.
    Ellie I will try the yakult when finished antibiotics
    Jen

  7. #7
    Forum Member Terry's Avatar
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    Get any equipment that you can if you have a little room Jen;

    We won't force you to use it but you will have it handy if you have a rough day, etc.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  8. #8
    Forum Member lorret's Avatar
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    Er thanks Terry.
    Jen ,Terry does have a few good ideas .we didn't think Tom was ready for a wheelchair, but now it cannot come soon enough. We are also having a through the floor lift but this won't be done till Christmas. Lorret

  9. #9
    Bakerchick
    Guest
    I have lost my voice in February and I can feel my weakness coming on in leaps and bounds. I was staying in a hotel and the shower was too hard to switch so I had a bath and I couldn't get out. So I went on all fours and managed to crawl out. I'm in Iceland and my sister invested in a in a lightweight wheelchair which is very useful. I nearly got blown away in the wind. BC

  10. #10
    jay jay
    Guest
    Saw ot and physio today they both agreed that be best to have a rollator due to leg weakness and the fall I had so their getting one sent out for me and also tefering to wheelchair services I don't need one yet but they said best get it now rather than wait untill need it as apparently it can take a while to get one.
    Jen

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