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Thread: New here!

  1. #1
    Forum Member Marigold's Avatar
    Join Date
    May 2018

    New here!

    Morning all,
    Have been reading and reading all your lovely supportive posts for the last month.
    Had a diagnosis in early May and my husband and I still seem to be ‘stuck’ in a very negative place.
    Still waiting for follow up appt at Oxford to discuss with team. Not really clear what type of MND I have.
    Stiff legs began a couple of years ago but legs seem to have deteriorated since Christmas and now I can’t walk at all so use a chair.
    Twitching is driving me mad! But tongue, swallow and breathing all seem ok at moment.
    Arms seem ok too!
    Really trying find a ‘new normal ‘ but proving elusive.
    I’m 52 and haven’t yet told my 3 lovely children (25, 23 and 20 ) as not sure exactly what to say!
    Have been exceptionally active and until Easter was a teacher!
    Any advice out there?

  2. #2
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Hi marigold and welcome to forum,

    If you have been having symptoms for 2 years, your progression seams quite slow.

    Shame that hubby is finding it hard but maybe letting your children and others know would make it easier for you both. I guess that you are in a wheelchair so they know somethings wrong.

    It is still early on after diagnosis so he might click out of it.

    Carry on teaching as long as it is not over tiring and look at reducing your work load if needed.

    May be a slightly different role, less hours or days.

    Best wishes, 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.

  3. #3
    Forum Member Barry52's Avatar
    Join Date
    Mar 2012
    Newark on Trent
    Hello Marigold and welcome from me.

    Talking to family about your diagnosis is always difficult and emotional but once they know they can be a great support. Being recently diagnosed is bound to have your thoughts in a spin but over time you will accept and adjust to life with the disease. I am currently involved with a project headed by ucl who are looking into the benefits of acceptance therapy and this is available at most of the MND care centres including Oxford so you may want to ask about it when you next attend clinic.

    Best wishes,
    I’m going to do this even if it kills me!

  4. #4
    Forum Member
    Join Date
    Dec 2017
    Hi Marigold
    Welcome to the forum and sorry for your diagnosis . I too was suffering with my legs that was getting worse . What a shock it was when I was told at my first neurologist appointment that I had MND
    This was November 2017 and because of Christmas I was not contacted until January and then everything seemed to happen at once and then didn't feel abandoned ! I was contacted by the speech therapist, occupational therapist, physio and had the appointments through for EMG
    I am older than you so my daughter is a lot older than your children and I told her straight away. But my granddaughter who I am very close too was away at university, and we wanted to tell her face to face ,so we waited until she came home . I must say once we had told her I felt a huge relief rather than keep secrets from her.
    There is no easy way to get through these first few months apart from taking every day as it comes , and try to keep positive because as you can see on this forum everyone is very helpful, and have very positive attitude to life.
    Don't be afraid to ask anything that you want on the forum .
    Take care
    Love Chris

  5. #5
    Forum Member
    Join Date
    May 2018
    Hi Marigold
    Welcome to the forum and I am so sorry for your diagnosis. Its such a shock !

    The forum is a good place for practical and emotional support because there are so many positive people who have lived with the condition for many years.

    I was a primary school teacher too and am fairly newly diagnosed. My lovely
    children are in their twenties and I felt so much better when I had told them as I was trying ( not very succesfully ) to hide my symptoms from them.

    Look after yourself and take care,
    Love Debbie X

    I was diagnosed in February and was a primary school teacher too so it is still fairly new to me.

  6. #6
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Welcome Marigold.

    The diagnosis does take a while to sink in and it's only a month really, so you're both bound to still be in shock.

    It will become more 'real' when you start attending the MND Clinic, but you'll have access to an Occupational Therapist, Physiotherapist etc. to help you out. As your first symptom was spasticity in your muscles and because your progression is slow, you may have Upper Motor Neuron (UMN) Dominance - but your Neuro will know for sure - and this spasticity can be eased by exercise, as well as by meds, so ask the Physio for a set of exercises to do.

    I'm not quite sure what your adult children already know, but honesty is best. I know it will be a difficult conversation, which has to be had, so make sure you're in the right frame of mind...

    Think about having counselling too.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  7. #7
    Forum Member
    Join Date
    Sep 2012
    Welcome Marigold

    You will find great support, advice, and knowledge as well as friendship from the forum folks here.

    Wishing you, and your family the very best in the days ahead.


  8. #8
    Forum Member Marigold's Avatar
    Join Date
    May 2018
    Thank you so much Terry, Barry, Chris, Debbie , CC and Ellie,
    I feel warmly welcomed and not so alone now!
    Lots of helpful advice here- particularly around trusting those close so that they can be supportive.
    Also keeping positive seems to be a common theme.
    Will be creating a job list today and actually achieve something useful for a change!
    It’s the start of my new constructive mindset!!!!
    Wish me luck....

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