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Thread: Hello folks

  1. #1
    Forum Member
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    Hello folks

    Hi everyone,
    So, Iíve finally joined the forum where Iím sure none of us really wanted to join.
    I was diagnosed in January 2019 with ALS / MND.
    I was originally diagnosed in Dubai where I was living and got 2nd / 3rd opinions in the UK.
    I have now moved back Ďhomeí after a fabulous 6 years in Dubai, and am beginning to settle down in Northamptonshire near family and friends.
    I am worried about the future (both in the short and long term) for my wife and our 2 children, aged 6 & 9.
    At the moment the symptoms are mainly in my arms.
    My kids just think I have a dodgy hand and theyíre both being really good about doing my buttons, opening bottles & cans etc. for me.
    At some point though weíll have to tell them the reality that is MND. This is the most worrying aspect for me.
    Any suggestions or advice would be greatly received!
    Staying happy, busy and positive though so itís not all bad! 😃
    Thanks guys, and best wishes to you all out there.
    Cheers, Iain.

  2. #2
    Forum Member Lynne K's Avatar
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    Hi Ian. Sorry that you've had to join us on this horrid scary journey. You have found a caring informative space and a place for the occasional rant. We are all non judgemental. I'm glad that you are now settled near to family and friends. These will hopefully be a source of support in the future. About your kids. The MND Association have literature for youngsters to explain the MND story in an acceptable way. I got a couple of their books for my grandchildren. You could ring to ask for these.

    I hope that you are now connected to your local services. These ought be Occupational Therapist, Speech Therapist, Physiotherapist and wheelchair services. You mentioned that your symptoms are mostly in your arms. I think that it's important to start voice banking while you have a good voice and some use of your hands. If you look at previous forum discussions you will find all the information that you need.

    Chat soon, 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.

  3. #3
    Forum Member Gillette's Avatar
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    Hi Iain,

    Welcome to the forum which as you say, no-one really wants to join.

    Sorry to hear that you've been diagnosed, especially having a young family. There is a wealth of support, knowledge and experience on here and people are happy to share it so if there's anything you want to know, just ask away.
    Dina


    Trying to keep positive, but not always managing.

  4. #4
    Forum Member Ellie's Avatar
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    Hi Iain and a warm welcome to you.

    My kids were 3 and 5 at my diagnosis and, right from the start, we were upfront with them, using age appropriate language - that's how we decided to do it and I'm not saying that's how everyone should handle the situation. Myself and my husband spoke to a counsellor beforehand to get advice on what to say and this was really helpful.

    I had fast progression at that stage, so my physical deterioration meant I was quickly losing function and it wasn't looking good for my prognosis, so we wanted to be open and honest with them. Also, I feared the playground chat from their classmates and wanted any news to come from me and their daddy.

    You're right Iain, kids do love being involved in helping us! I also made a point in letting them try out every bit of equipment (where possible) so they weren't afraid of it and they knew its purpose - at this stage they'd give many a junior doctor a run for their money with their knowledge of MND, meds, syringes, NIV, feeding tubes etc.

    As Lynne said, the MNDA have workbooks they can send out.

    My hospice were also involved in counselling them at various stages and, in fact, still see them from time to time, as their emotions developed and matured.

    You might find this info from the MNDA helpful: https://dbsy278t81889.cloudfront.net...ung-people.pdf

    Take care.

    Love Ellie.
    Last edited by Ellie; 22nd July 2019 at 13:52.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  5. #5
    Forum Member Kayleigh's Avatar
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    Hello Iain and welcome,

    I'm sorry about your diagnosis but it's good to hear you have got lots of support from your family.

    Following on from the advice you have already received, you might be interested to read the article 'Learning about MND through stories and play' on pages 6 and 7 of the latest edition of the Mnda's Thumbprint magazine:-

    http://https://dbsy278t81889.cloudfront.net/app/uploads/2019/07/12174835/Thumb-Print-Summer-2019.pdf

    Very best wishes to you and your family,

    Kayleigh

  6. #6
    Forum Member nunhead_man's Avatar
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    Good afternoon Iain

    Welcome - I am also sorry to hear about your diagnosis and it sounds like you are being very sensible about it.

    I have little to add to the above as our daughters are older, but they share a willingness as mentioned above, to help, and do like to be asked as they say this brings them closer to their dear old dad.

    In particular, I have arm onset MND and my left hand was getting really quite swollen because of course the muscles help with moving the lymph around the body, so we moved to breakfast routine where drinking our early morning coffee is accompanied by a 10 minute hand massage - this is something my daughters do when they are here, my wife when they are not.

    We say we are living through MND (Not with it - I live with my wife and daughter and am living through MND) and this kind of sharing of things I suspect will make the grieving process easier when the time comes

    Warmly
    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

  7. #7
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    Hi Iain and welcome to the forum,

    I am so sorry for your diagnosis. Well done for finding us and posting on here as the first post is tricky as it seems to make it real.This is a good place for emotional support and practical advice from people who really understand.

    It's great you're trying to stay happy and positive and being with your children will help. My children and family are the best therapy.

    Take care of yourself,
    Love Debbie x

  8. #8
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    Hi Iain, and welcome to this very friendly forum, I am sure you will find lots of advice on here.
    Best wishes Sheila

  9. #9
    Forum Member Barry52's Avatar
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    Hello Iain and welcome from me.

    You have already had some great advice and you will find many answers to your questions over time from our forum family. I have been involved in presenting MND to school children and I have found they are very perceptive. As Ellie mentioned it is best to be upfront and avoid the second hand rumours but everyone will have their view on this.

    Best wishes,
    Barry
    Iím going to do this even if it kills me!

  10. #10
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    Welcome Iain

    Thereís a lot of good advice in the above replies and the forum generally but any questions and someone may help

    It may be obvious but falls should be avoided

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