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    Hello and I need advice please

    I was diagnosed in september this year after a few unexplained falls and was told 3 days later after MRI, and EMG that i had Mnd and my family are devastated.

    The only person I haven't told is my 23 year old grandson who has autism. he knows that i am not well but i haven't told him what it is, he already suffers with depression and I am afraid this will be to much for him and tip over the edge

    His parent think I should tell him but i don't no how, to me why should I make him as miserable as we are.

    It has been an awful year and his parents say that i should tell him so that he can start 2020 afresh but surely he is going to take this news in to 2020.

    regards
    Hettie

    #2
    Hello Hettie
    It is very difficult, (I found it hard telling my youngest teen), but he will notice your health and abilities, perhaps just be honest it is an illness, and there is no cure at the moment, but there may be soon, hopefully, and there are some people who do live with this condition for many years.
    Best wishes to you.
    Olivia

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      #3
      Hi Hettie and a warm welcome to the Forum, albeit one no one wants to join...

      Sorry about your diagnosis.

      I guess your grandson's parents know him best and if they think he'll be able to process the news of your illness apropriately, then it seems like the right thing to do.

      I'm sure your son/daughter will give you guidance as to how and what to say and also be with you when you tell him, in case either of you get upset (which, by the way, is completely normal!)

      I don't know how high functioning your grandson is but it might be advisable to tell his GP, nurse, counsellor, employer etc (if appropriate) that he received news which may upset him and affect his mood.

      I know your diagnosis is a shock to you, your family and friends, but although it may feel like it now, especially at this time of the year and with the spectre of telling your grandson hanging over you, life does not need to be "miserable". I hope you have good support, both emotional and practical, and can find a way to get enjoyment out of life, even though that life looks very different than planned.

      Big hug to you Hettie.

      Love Ellie.
      Last edited by Ellie; 28 December 2019, 15:15.
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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        #4
        Thank you for your advice as I wasn't sure what to do.
        Hettie

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          #5
          Thank you as I wasn't sure what to do

          Hettie

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            #6
            Hi Hettie. Sorry about your recent diagnosis and welcome to our forums. Ellie gave good suggestions that I second. I hope too that your support team has been set up for you (OT, Speech Therapist, Physiotherapist and wheelchair services).

            You and your family will obviously be devastated. I hope that they all support you and each other. Hugs, Lynne x
            ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
            I'm staying positive and taking each day as it comes.

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              #7
              Hi, I still can't believe my diagnosis, 6 months ago i was fine and then i had 2 falls in june of this year and i haven't been well since.
              regards Hettie

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                #8
                Have you got a walking aid yet Hettie? If not then ask either your OT or Physiotherapist. Lynne
                ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                I'm staying positive and taking each day as it comes.

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                  #9
                  Yes I have 4 wheel walker Lynn but its to big to use in my home. But when i am out my daughter gets me a shopping trolley to hold on to. I can't walk that far before my legs buckle.

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                    #10
                    Yea Hettie. My big 4 wheeled walker is more stable. It's a Topro something or other and it's too big in our little 2 bed ground floor flat which is a shame. It's my favourite. I've got another walker, a light 4 wheeled that's smaller so ok in the flat. The Topro folds handles together so much better in some places, like a friends we stay at frequently. I collapse handles together to get through small gaps. I'm using that New Years Eve as we're staying at the same place after my husband and the band that he plays in do a New Years Eve ceillidh. I'll be in my wheelchair in the hall, but if loos are difficult then hubby will bring the Topro in.

                    It's good that you can get out shopping,

                    Lynne x
                    Last edited by Lynne K; 29 December 2019, 17:46.
                    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                    I'm staying positive and taking each day as it comes.

                    Comment


                      #11
                      Good evening Hettie

                      I have nothing practical to add to what is being suggested above just wanted to offer my welcome to the forum - which has may already been said is not a place anybody really wants to be.

                      I hope you can do some practical things to make yourself more comfortable - my view is the more comfortable I am the longer I will be able to go on
                      Warmly


                      Andy

                      ​Diagnosed 03/2015. One sided 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"

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                        #12
                        Hello Andy, thanks for your reply, I am struggling as to whether to take the riluzole or not because the tablets make me feel so weak and light headed but if i don't take them my legs start to buckle underneath me and i fall down.
                        I feel as though I can't win.
                        I have a walker but I still feel the weakness in my legs and I have leave before my legs give way

                        regards,

                        Hettie

                        Comment


                          #13
                          Good morning Hettie

                          Originally posted by hettie View Post
                          I am struggling as to whether to take the riluzole or not because the tablets make me feel so weak and light headed but if i don't take them my legs start to buckle underneath me and i fall down
                          I hear what you say but I'm interested in the side effects you attribute to riluzole - partly because I get no such side effects which makes me wonder if something else is going on?

                          Perhaps somebody who knows more about these things will be along in a minute to say something.

                          About walking aids et cetera I think people should use what they need and not worry about the implications - a fall or a trip might suddenly make you much worse.
                          Warmly


                          Andy

                          ​Diagnosed 03/2015. One sided 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"

                          Comment


                            #14
                            Hello Hettie,

                            The patient information leaflet about Riluzole lists possible side effects and recommends we speak to our Doctor if we experience any symptoms that could be side effects.

                            http://https://www.medicines.org.uk/emc/files/pil.8572.pdf

                            Best wishes
                            Kayleigh

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