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Thread: Nervous newbie

  1. #1
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    Nervous newbie

    Hi everyone,

    My dad was diagnosed last week with motor neuron disease (ALS).
    It has been a horrible 12 months, my grandad (dads dad) passed away last march following a long battle with dementia. My dad was heartbroken obviously.

    Dad started with pins and needles feeling in his hands which he was told was onset arthritis, then problems with his arms which they couldn't answer.

    Around September he started to have swallowing issues with fluids, only every so often.
    The swallowing issue continued and at Christmas my dad had a TIA/neurological episode.

    We have now been told he has MND, it was such a huge shock as hes only 53.
    He has spent his whole life making the world a safer place, serving in her magisties forces and police.

    Never smoked, doesn't drink, always been fit healthy and independent. A true hero and role model for me and my children.

    I'm scared for the future I feel like I'm losing my dad.

    The medical professionals have been great, appointments are already coming through.
    It's just so daunting and we dont know who to contact or if were missing anything.

    Anyones advice would be great.
    Tips.
    Ideas.

    Thanks everyone x

  2. #2
    Forum Member Kayleigh's Avatar
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    Nov 2018
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    Hello Boden and a warm welcome to you,

    I'm sorry your Grandad passed away and that your Dad has been diagnosed with MND.

    I expect your Dad will be proud of you for introducing yourself here and for wanting to find out as much as you can to help him and your family come to terms with his diagnosis.

    Yes, I agree it's a terrible shock to receive such a life changing diagnosis. I was a bit younger than your brave Dad when I was diagnosed and, although not as physically fit as him, I too had what is considered to be a healthy lifestyle.

    It's good your Dad is starting to receive appointments. It could be that he will get ongoing support from a community healthcare team including a dietitian, speech and language therapist, physiotherapist and occupational therapist. I expect he might also get appointments at an MND clinic at hospital.

    The MNDA offer support on their helpline and there are local Area Support Co-ordinators who are very helpful and friendly people to make contact with as well.

    http://https://www.mndassociation.org/support-and-information/local-support/area-support-coordinators/

    You mentioned your Dad's swallowing issues. I have posted a link below to information on the MNDA website that might be helpful.

    http://https://www.mndassociation.org/support-and-information/living-with-mnd/eating-and-drinking/

    If you have any questions, please feel welcome to ask them. We are a friendly group of people and we try to be as supportive as possible.

    Best wishes to you and your family.
    Kayleigh x

  3. #3
    Forum Member Lynne K's Avatar
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    Hi Boden, I'm sorry about the fairly recent loss of your paternal grandfather and that now your dad has been diagnosed with MND. It must be a dreadful shock to everybody.

    You have found the right place to come for support, tips and concerned friendship.

    Kayleigh's advice and links are great. If you have any other questions we all will do our best to answer or sign post where you may find a solution.

    I'm wondering whether your dad will be offered genetic testing, given his age and a family history of dementia. That's something for him to take up with his consultant.

    Please look after yourself, 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.

  4. #4
    Forum Member Barry52's Avatar
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    Hello Boden and welcome to the forum family.

    Iím sorry to hear that your dad has been diagnosed with MND. You will gain lots of support and knowledge from members here and similarly for your dad if he decides to join us.

    Kayleigh has provided good advice with links to the key people/organisations. I would add that whilst it is early following diagnosis he may want to consider voice banking. Many people with this disease develop speech issues and whilst there are various speech apps available, it is good to have your own voice.https://mov.acapela-group.com/learn-more/

    I understand how you must feel as my family went through the same shock but we eventually realised that we all have to make the best of the situation. A positive approach is important for all concerned and remember that life can go on, albeit with adjustments.

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

  5. #5
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    Hi Lynne and Kayleigh,
    Thank you so much for your replies, I am already finding this forum so useful and supportive, everyone seems so lovely.
    I will have a look at the links today.
    Thank you x
    Claire

  6. #6
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    Thank you x

  7. #7
    Forum Member Ellie's Avatar
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    Hi Claire,

    I am sorry for your Superhero Dad's diagnosis - I know I'd be devasted if my own dad got the same diagnosis (I'm a Daddy's girl )

    Please feel free to ask questions, especially before or after his appointments if you're unsure of anything.

    If he isn't linked in with a hospice, it's highly recommended. They shouldn't be seen as being just for end of life care, but as a good resource for helping the whole family maintain a good quality of life during a life-limiting condition.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  8. #8
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    Hi Claire and a warm welcome to the forum from me.

    I am so sorry for your Dad's diagnosis and for the loss of you grandfather. The diagnosis is such a terrible shock and its really hard to think straight, for a while, but there is still good family times ahead ! It sounds like your wonderful Dad is lucky to have such a caring daughter.

    I wont add to the very good advice you have had on here, just to say it's the right place for support and practical advice.

    Take care of yourself,
    Love Debbie x

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