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    Getting harder

    Feels like we’re on our own sometimes,when family members ain’t helping,my wife was diagnosed in may last year, and in that time am pulling my hair out ,think it certainly is a different generation now, as if my parents were alive I would certainly pull out all the stops

    #2
    Ricky135 I feel the same at times. Like your situation i was diagnosed last May. At first a few friends helped with diy alterations but then it went quiet.

    i have 5 siblings and only 1 comes to see me. He helps us lots even though it is hard seeing me progress.
    my mom is 80 but she still comes every week.

    Diagnosed May 2021 bulbar onset als.

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      #3
      Thanks Shelly am sorry to hear that,it must be so so hard for you and even tho we keep smiling a quick 10 minutes call that’s all we ask, I know it’s hard to see there mum deteriorating but it’s as if they can’t be bothered sometimes

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        #4
        Ricky there are 2 kinds of people. Ones that can't deal with the strong emotions of seeing their loved ones battle a terminal illness.
        then there are the ones who can face it and enjoy the moments with their loved ones.

        My husband is finding it tough at the minute. But this week I actually asked friends and family for help.

        How are you coping?
        Diagnosed May 2021 bulbar onset als.

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          #5
          Ricky135 I understand your frustrations. I feel like people are too busy and time passes quickly and they make excuses or prioritise other things.

          Sometimes I want to shake them and yell - do you not realise time is running out? Make memories with me now. If I matter to you prioritise ME. But I don't and I'm sad they will regret what they DIDN'T do when they could xx
          Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

          Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!

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            #6
            I really found it difficult to ask for help and found it difficult when help wasn't offered. If it was me I'd be there doing my best.
            when i can think of something profound i will update this.

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