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  1. J

    Some tips you may find useful, please read

    Thank you very much for your kind words. I am very sorry that your husbad has been diagnosed with ALS; it is a difficult journey and there is so much to learn and to deal with. It is worth having certain things organized or at least to know where/who to turn to when the need arises. It gives...
  2. J

    Some tips you may find useful, please read

    Thank you Dana. I am very sorry about your Dad. I used this forum when my Mum was ill and I found various bits of advice very helpful. Best wishes Julia
  3. J

    Some tips you may find useful, please read

    Dear CJ, Thank you for your kind words. I am so sorry about your husband. Just stay strong. I believe it is so important for our loved ones to see us coping well. My best wishes Julia
  4. J

    Some tips you may find useful, please read

    Dear Barry, I am sorry that what I wrote sounded so depressing. I didn't mean it to be like that; I suppose I just wanted to put my experiences on paper so they can help in some way. I am so sorry about your difficulties with mobility, speaking and eating/drinking. I assume you are using a...
  5. J

    Some tips you may find useful, please read

    Dear Ann, I am so so sorry you have been diagnosed. I don't really know what to say Ann apart from repeating the same thing: do not spend your life worring, although it is ever so hard not to. It may sound silly but I am a firm believer in meditation and visualization. It works on many...
  6. J

    Some tips you may find useful, please read

    Dear All, Thank you so much for your reply. I didn't have access to my computer for a few days so I couldn't even see if anyone read what I posted. I fact, I worried a lot that all I wrote sounded so depressing and discouraging. I am very sorry if it was so. I just thought that some tips...
  7. J

    Mom has feeding tube, won't use it.

    Dear Lisa, I undrstand very well what you are going through; my Mum passed over with MND not long time ago. She never wanted to have a tube fitted but eventually agreed to it as feeding became extremely difficult. She passed away a day before the operation was due. It is very difficult to...
  8. J

    Some tips you may find useful, please read

    Hello, I have used this website a lot during my Mum’s ilness but I have never posted on it. Now, a few months after my Mum passed over, I thought I ought to share with you some of my experiences that you may find useful. My Mum had a bulbar onset, but because she had been for a long time on a...
    • Julia Warren
    • Thread
    • adjustable advice back bed book bulbar bulbar onset chair clothes communication conversation coping death depressed drugs early equipment feeding finger hope life medical mnd movement muscle muscle weakness muscles music onset problems progression sad secure shower shower chair sleep speech stages steroids support symptoms transfers wanted weakness website wheelchair work worry
    • Replies: 14
    • Forum: General discussion about ALS/MND
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