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Thread: Hello my name is Kayleigh

  1. #1
    Forum Member Kayleigh's Avatar
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    Hello my name is Kayleigh

    Hello. I have feel devastated by this diagnosis but hope to be able to give advice and support to others on this forum as well as learning from you all about how to cope. Have already got support from OT, MND nurse etc. Take care. Kayleigh x
    Last edited by Kayleigh; 21st November 2018 at 22:55.

  2. #2
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    So sorry you have found yourself here it’s not where anyone wants to be, although this is the best place for advice and information as contributors or either sufferers or their careers. Best wishes.

  3. #3
    Forum Member Terry's Avatar
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    Nice to have you on board and already helping others, Kayleigh;

    Glad to hear that you've found tips and information here helpful.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  4. #4
    Forum Member Terry's Avatar
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    Hi Kayleigh,

    It's just good you posted, it doesn't matter which way you feel happy doing it.

    I have four avatars that I use, and that was my Halloween one.

    What sort of age is your son?

    It has been over eight years since I was diagnosed and I still have dreams where I am running around and can do everything.

    Love Terry

  5. #5
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    Hi Kayleigh
    Welcome to the forum and sure you will find it helpful as well as practical it helps with moral support too . It is so true about dreams I like to go to sleep and dream that I am "normal" again . I was diagnosed one year ago today and although we get on with life , it still doesn't feel real. Being positive helps me , but my daughter and granddaughter are struggling more as I get worse .

    Love Chris x

  6. #6
    Forum Member Barry52's Avatar
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    Hi Kayleigh and welcome.

    From your comments so far you appear to have a positive attitude and that helps. Safety is paramount when moving around and you have taken the right steps with your equipment.

    There have been numerous discussions about dreams on this forum and if you put dreams into the search function on the top toolbar you can read them. I don’t know if it’s the medication we take or a change in brain function as a result of the disease but we appear to have vivid dreams.

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

  7. #7
    Forum Member Ellie's Avatar
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    Welcome to the Forum Kayleigh. (Instantly have an image of the wonder Kayleigh in Car Share - sorry, that must wreck your head !! It's the same for me since Rang Tan's Iceland advert )

    Good to know you're linked in with support services.

    I've had ALS for 12 yrs - 11 in wheelchair & with a feeding tube, 10 without speech - but I am always normal in my dreams, even after years!

    Stay healthy.

    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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    Welcome Kayleigh, I am so sorry for your diagnosis .It's such a huge shock !

    There is so much support and friendship on this forum, from people who really understand. It's the right place for advice both practical and emotional. You sound like a really positive person but don't be afraid to have an occasional rant ... I think we probably all do.

    In my dreams I am jogging on a beach. I dream this frequently which is really weird as I have never jogged on a beach in the past, only sunbathed !

    Take Care and look after yourself
    Love Debbie

  9. #9
    Forum Member Lynne K's Avatar
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    Welcome to the forums Kayleigh. It is hard for us all especially at the beginning of this journey. But these forums are a source of support. There is literature available for somebody to read with your young son, about MND. I got two for my granddaughters. MND Connect may have the details. 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.

  10. #10
    Forum Member Lynne K's Avatar
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    Thanks Kayleigh. I'm looking forward to our move. 4 sleeps as children say ��, 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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