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Thread: Als

  1. #1
    Forum Member Puddy's Avatar
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    Als

    From around March last year, my husband, Nigel, started saying his right leg was heavy. To cut a long story short, he was diagnosed with ALS in July last year. Currently, the only working limb he has now is his left arm. His speech became slurred and now I can barely understand him. Is it usual to deteriorate so quickly? I just don't know what to expect or how quickly to expect it. I am seeing a psychiatrist and a psychologist because I'm not handling it mentally.




    Husband, Nigel, diagnosed with ALS in July 2019. We live in Spain and the medical care is superb. Nigel currently taking Riluzole. Tried acupuncture/Chinese medicine and bee venom (privately), but not helpful. Had stem cell therapy 6 months ago, but no improvement so far.

  2. #2
    Forum Member Ellie's Avatar
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    Nigel's progression is fairly fast but unfortunately not overly unusual.

    Is his progression pretty steady or does he go through periods of progression before a few brief weeks of respite? None of the treatments he had speeded his progression, did it?

    As I said on your other thread, I'm truly sorry you are both having such a torrid time and I am glad you're getting professional help.

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

  3. #3
    Forum Member Puddy's Avatar
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    Thanks Ellie. We seem to tick over for a couple of weeks, until a new problem comes along which we have to work around e.g. was able to stand, suddenly can't stand etc. He had some private physio which might have overdone it.




    Husband, Nigel, diagnosed with ALS in July 2019. We live in Spain and the medical care is superb. Nigel currently taking Riluzole. Tried acupuncture/Chinese medicine and bee venom (privately), but not helpful. Had stem cell therapy 6 months ago, but no improvement so far.

  4. #4
    Forum Member nunhead_man's Avatar
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    Good afternoon Puddy

    I can't really add anything to what Ellie has said other than to offer you a warm welcome and ask away on any topic
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

    "Things turn out the best for people who make the best of the way things turn out"

  5. #5
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    Hi Puddy,
    Welcome to this forum I have been absent from this forum for a while. I know who you feel with your situation. I have lived and cared
    for my loved one and witnessed plateaus and valleys.

  6. #6
    Forum Member Puddy's Avatar
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    I look at my husband struggling and it breaks my heart. When he cries I can't help him because nothing is going to cure him. How do you deal with this day by day? I can't get my head round this.




    Husband, Nigel, diagnosed with ALS in July 2019. We live in Spain and the medical care is superb. Nigel currently taking Riluzole. Tried acupuncture/Chinese medicine and bee venom (privately), but not helpful. Had stem cell therapy 6 months ago, but no improvement so far.

  7. #7
    Forum Member nunhead_man's Avatar
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    Good evening Puddy

    As you know I'm coming into this carers matter from the side of somebody who suffers from MND.

    I was swearing about this disease yesterday in the presence of my daughter who helps with my care although the amount of care I need at the moment is quite limited. She was getting quite upset, because, as it turned out this was reminding her of where I was going and asked me not to get angry when she was around if I could and talk to somebody else about it.

    So in relation to your challenge, I'm not quite sure what to suggest other than finding your husband someone else to talk to who understands MND and can comfort him in some way.
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

    "Things turn out the best for people who make the best of the way things turn out"

  8. #8
    Forum Member Broostine93's Avatar
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    Hi Puddy,

    It's been a while since I've been on the forum due to my caring role coming to an end in February of this year. Firstly, you've absolutely done the right thing by talking to professional counsellors- keep doing this, as it will help you get through each 'stage' as your husband progresses.
    With regard to his cries of despair, you could try the following:

    - Distraction techniques: i.e. watch films together, listen to music, listen to an audiobook together or go through old photo albums. If he can get into a garden, definitely spend as much time there with him as possible- it's a proven fact that being outside alleviates a poor mood/mental state.
    - See if he wants to talk to a counsellor, in the same way that you are. It will help him immensely if he is struggling to cope.

    I think, being on the other side of this, we can tend to 'put on a happy face' for our loved one- sometimes, that's a good thing (in my case, if ever I broke down in front of my relative, she would start crying because she'd feel guilty about having to rely on me so much- this made our relationship very strained, over time). You know your husband best, so you should have a pretty accurate understanding of how he'd react if you 'took off the mask' in front of him- if he's the sort that would find solace in solidarity, absolutely talk through how you feel about it all and have a good cry together- it can be incredibly healing and an excellent bonding experience to know that you're both in it together.

    It's a long, hard road to travel and it's incredibly unfair- be kind to yourself, be kind to your husband and focus on the memories you want to make together- I don't think there are many people on this forum who haven't had some kind of happy and lasting memory made since they or their loved one was diagnosed

    Try to find one positive out of every day- you'll be amazed at how easily you can turn it into a habit
    "This, too, shall pass"

  9. #9
    Forum Member Puddy's Avatar
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    Thank you both. We have good and bad days and we do manage to laugh. What with this virus thing, our lives have changed forever.




    Husband, Nigel, diagnosed with ALS in July 2019. We live in Spain and the medical care is superb. Nigel currently taking Riluzole. Tried acupuncture/Chinese medicine and bee venom (privately), but not helpful. Had stem cell therapy 6 months ago, but no improvement so far.

  10. #10
    Thanks for posting Puddy.

    I was beginning to fear the Forum itself had gone into lockdown!

    Thinking of you both.

    Doug

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