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    Newly diagnosed

    Hi all
    im 48 and was diagnosed 4 days ago
    im still in shock n very tearful
    my biggest concern at the mo is how do I tell my 12,17 & 19 year old daughters all with their own plans for the future which I don’t want to ruin. Anyone any tips of breaking the news to them?
    I was told my area doesn’t have a specialist person to sort referrals etc so all being done by co-ordinator at hospital.
    I have an MRI booked in 2 days but surely this should’ve been before the diagnosis?
    Last edited by Chelle73; 21 February 2022, 20:19.
    Diagnosed 17/2/22
    summer 2020 - Left arm onset
    Jan 2022 - breathing now affected

    #2
    Good evening Chelle73 - I'm so sorry to hear your news and not surprised you are struggling. I'm 47 and pretty new to all this too. I had to tell my daughters (18 and 16). It was hard and I was a mess worrying about it.

    But they knew something wasn't right and I think being honest and telling them was a weight off my mind and has helped them accept that I will be open with them. We've had lots of tears and I have warned them against too much googled as everyone's journey is different.

    I hope you manage to process the news and find support and comfort here. Talk to your daughters when you feel ready (I did mine one at a time) xx
    Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

    Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

    Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

    Comment


      #3
      TinyLady Thank you for responding
      i was thinking of telling the 3 of them together but not sure now. My youngest is due to go on a PGL adventure holiday in 4 weeks and my partner doesn’t think I should tell her before she goes. My middle daughter has literally just accepted a place at uni to start in sept and I’m worried that she’ll delay or postpone because of me - I don’t want to be the reason she changes her future plans and my oldest is a student paramedic so she possibly has seen patients with this awful disease already
      im so confused and unsure what to do
      Diagnosed 17/2/22
      summer 2020 - Left arm onset
      Jan 2022 - breathing now affected

      Comment


        #4
        Chelle73 A warm welcome to the forum Chelle - mum to mum, I wish we didn't have to meet like this...

        My kids are 18 and 20 now, both in Uni, but were younger than yours when I was diagnosed which was probably easier to tell them, tbh.

        You might find the MNDA guide on information for young people helpful, click here

        You know your kids best but think hard on telling the 12yo before going away - I'd tend to agree with your partner but I don't know your girl.

        I had a chat with my kids about the importance of living their lives and nothing was to stop them persuing their dreams.

        Yeah, glad that MRI wasn't urgent 🙄 and yes, they are done pre-diagnosis, to rule out other possibilities.

        The various healthcare professionals will soon find you, if not, do chase them up.

        Love Ellie xx
        ​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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          #5
          Hi Chelle. It is a terrible shock, but you are in exactly the right place to ease your mind. Stay Strong. 💪😁😉🤗xx
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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            #6
            I can only send a big hug. My heart goes out to you and everyone in the same position.

            😘
            when i can think of something profound i will update this.

            Comment


              #7
              Chelle73 hello and welcome. I remember the horror of that diagnosis overwhelming me so sending you a big hug. There is a lot of support and good advice on this friendly forum xx
              Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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                #8
                Chelle73 welcome to the forum. The early days are overwhelming however you'll find lots of virtual support in this space. The MNDA are extremely supportive and are on hand for advice too.

                ​​​​​​Take care xx
                Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

                Comment


                  #9
                  Chelle73 - I think it's hard to know when to tell them and important they still follow their dreams, I told my girls it was maybe even more important, because you realise each day is a gift. Their happiness is what makes me happy and content.

                  I think your partner has a good point with your 12 year old. They may well already be worried/ aware something is wrong or upsetting you.

                  My girls knew something was seriously wrong with me and I was worried they were worrying and bottling things up. I suppose it depends on your symptoms and journey- how obvious things are to them.

                  Whatever happens everyone here will listen and support you as much as they can xx
                  Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                  Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                  Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

                  Comment


                    #10
                    The truth always hurts but is miles than non disclosure
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                    Comment


                      #11
                      Agree with Matthew get it out in the open. There will be plenty of tears but I found my kids,in their twenties, wonderfully supportive as have friends I have told. Try to stay positive I know it isn’t easy but my view is it’s better to try and be positive or at least stoic with MND than depressed with it. Good luck.

                      Comment


                        #12
                        Originally posted by Aidan in Shrewsbury View Post
                        ... get it out in the open.
                        There's no doubt that it's best said, just not immediately before the 12yo goes off on her holidays without her family... xx
                        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                        Comment


                          #13
                          Chelle73 so sorry about your diagnosis. It’s early days for you to accept this , so perhaps it may be best to tell your daughters when you’ve given yourself a little more time for “it” to sink in and when your less upset. Whenever you decide I just hope it goes as well as it can be.
                          It’s my husband who has this condition, almost Five years.Xx

                          Comment


                            #14
                            Chelle73 it is a tough time just taking everything in and attending all the appointments etc. My girls were 19 and 25 when I was diagnosed, so a bit older, they knew I'd had symptoms and various tests. After the understandable shock, we got back into a routine, both have been travelling, worked overseas, been away at university, living their lives. Try to stay positive; I have had this 10 years, still talking, eating, getting around with support xx

                            Comment


                              #15
                              We told our sons (age 25 and 33) on the day of my husbands diagnosis. They knew about his neurology appointment and we either had to tell them the truth or lie. We saw them separately and told them face to face. It was hard and there were lots of tears. I appreciate that our boys were adults, but there was no way we could have delayed telling them - particularly as we couldn't behave "normally" as the bottom of our world and us had just fallen into an enormous dark pit.

                              Our youngest sons knee jerk reaction was to announce that he was going to get married to his long term girlfriend as he wanted his dad walking at his wedding. So he threw himself into arranging a wedding for a month later - albeit with COVID reduced numbers. With hindsight this was a good call as only a few months later my husband could no longer walk, and now 10 months later can no longer move unaided (any limbs) speak or eat or drink.

                              Bear in mind progression rates vary greatly and "hiding" the diagnosis may prove very difficult if progression is quick. And of course you have no way of knowing the speed. Don't mean to scare you, but the whole families lives will never be the same again.

                              Whenever you choose to tell the family will be a bombshell, and your current life will change. I wish I could be more positive.

                              The children will sense a change in you and will wonder why, and they may even imagine all sorts of other things are going on. If you don't tell them you may not actually be protecting them from going into dark places - the wrong ones. Depends on how perceptive the children are - you know them best.

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