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Thread: Hi and I am confused/scared

  1. #31
    Forum Member Gillette's Avatar
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    Gloslad, so sorry that you've been diagnosed. Sending hugs.

    Remember that you will receive help, support and information from this forum - just ask away.
    Dina


    Trying to keep positive, but not always managing.

  2. #32
    Forum Member Kayleigh's Avatar
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    Hi Gloslad,

    I'm so sorry about your diagnosis. Understandably, you have got a lot to come to terms with and things might seem very daunting - If you or your wife would ever like someone to talk things through with, I can recommend giving the MND Connect helpline a call (I have provided a link to details of the helpline below, just in case you need them):-

    http://https://www.mndassociation.org/support-and-information/our-services/mnd-connect/

    Please feel welcome to ask for advice on this forum, whenever you would like to.

    Love to you and your wife,
    Kayleigh x

  3. #33
    Forum Member Terry's Avatar
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    Hi Gloslad;

    It's not nice to be diagnosed even when you are pretty sure that you have it.

    I remember sitting down and crying on the grass at the hospital when I knew. One or two people came up to me very concerned. My EL took over me.

    Best wishes, Terry

  4. #34
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    So sorry to hear of your PLS diagnosis. Weve only been dealing with PLS for a short time (just over a year - its my mum who has it). Its been overwhelming a lot of the time but I find this forum so helpful and went to my first MND association carers meeting this month and felt so much better afterwards. Maybe your wife could go to one local to you when shes ready? Mum is also going to go to support meetings and Im hoping these will be helpful to her too. There is so much help and support out there and Id encourage you to take up every offer. Our experience of MND is that it is relentless and ever changing so as best you can try to keep one step ahead of it (in terms of help needed, aids and adaptations, claiming benefits/disability etc). Everything takes time and time is not on our side for a lot of us. Take care and I hope you are coping as well as poss.

  5. #35
    Forum Member Lynne K's Avatar
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    Sorry for your diagnosis Gloslad. But at least you now know. It certainly is a hammer blow at first. I won't overload you at this time. Take care. 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.

  6. #36
    Forum Member Barry52's Avatar
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    Hi Glos,

    You have a diagnosis from a very experienced neurologist and whilst any form of MND is difficult to cope with you have time on your side. That doesnt mean living with the condition will be easy but you will have time to adapt. Your biggest risk is injuries from falling so please accept walking aids before you injure yourself.

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

  7. #37
    Forum Member Ellie's Avatar
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    Hi Glos,

    I apologise, I did say I wouldn't bombard you but...

    I just reread your first post and wondered - did anyone say anything about having high muscle tone (spasticity) in your leg muscles?

    Do you feel resistance when bending your knee, for example?

    If you've high muscle tone which affects your ability to walk, taking the right dose of an antispasmodic med could help you - of course a physiotherapist or a GP would have to assess you prior to anything being prescribed.

    Braces/supports may also be beneficial.

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

  8. #38
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    Hi all, sorry for slow response. Thank you all for your kind words of support.

    Ellie, yes I do have spasticity in my legs.

    I feel resistance in left leg more than right leg.

    Prof Turner did mention baclofen but said need to be careful as it can go too far the other way.

  9. #39
    Forum Member Ellie's Avatar
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    Yes Glos, Baclofen will reduce your spasticity, which may improve your gait - if your muscle tone is high, it makes for less fluid / natural leg movement, affecting your gait.

    As I don't know if your walking may be improved with more natural muscle tone, I may be barking up the wrong tree!! I think a Physiotherapist is best placed to assess and advise you.

    If you decide to start taking Baclofen, getting the dose correct is vital - start off very low and titrate up until you find the sweet spot between flexibility and functionality. It's trial and error but it is achievable, particularly if you're in tune with your body.

    My spasticity isn't symmetrical and I can preserve function where I have it - I use the term 'function' loosely when describing my powers

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

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