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Thread: In denial

  1. #21
    Forum Member Wend's Avatar
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    Thanks Charles, I agree - we lessen it as much as possible, but it's hard when the consultant told me that over the next 6 months I can expect the same level of deterioration as I have experienced over the last 6... hey ho!

  2. #22
    Forum Member Ellie's Avatar
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    It's understandable about the meds Wend, but if they make your daily life less of a struggle, that will surely help...

    One thing though - if you do start new meds, introduce one drug at a time so you'll know what, if any, its side effects are.

    If you've spasticity in a muscle group, Baclofen is the first option med but it can sometimes take a while to get the optimal dose!

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

  3. #23
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    Hi Wend

    I like your purple dragon avatar....very Khaleesi

    CCxox
    .

  4. #24
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    Hi Wend
    When you first find out that you or your loved one has MND it is really tough, but it does get better, although you cannot believe that at the moment. Although obviously life will never be the same, you will enjoy things in a different way.
    It is still early days and everyone copes differently. Some get active in local groups, fundraising etc. Others try and do everything they can while they can.
    Try and think of some special events, holidays, treats etc that you are still able to do. Also some people opt to go on a drug trial - I see you are in Kent and there is a trial with centres in your area (London etc) which I think are still recruiting for the Mirocals trial. My husband is on it and although there is a 50% chance he is on a placebo it gives us something to focus on and if it doesn't help people with MND now, maybe it will help future sufferers. However, the trial (and others) have strict criteria, you cannot have started Riluzole, so just keep that in mind and maybe have a look at the info on this and other trials on the MNDA website. Then you can discuss options with your doctor at your next appointment.

    Take care - so sorry you are here - but it is the one place where people really do know what are going through and can give you the right support.

  5. #25
    Forum Member Wend's Avatar
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    Gotta be Fierce!

    Quote Originally Posted by ccinjersey View Post
    Hi Wend

    I like your purple dragon avatar....very Khaleesi

    CCxox
    LOL! thank you - bucket list job - find out what liking purple and dragons means!!
    xx

  6. #26
    Forum Member Wend's Avatar
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    Thank you - I nearly cried - but no! not yet!! Thanks for the advice - I have told my consultant at Kings to sign me up for anything and everything - I don't mind that I may get a placebo - if it helps someone at some time in the future, it's all I can do.
    I am cashing in my private pension so we can all go somewhere special - Iceland is looking interesting )
    Take care
    x

  7. #27
    Forum Member Terry's Avatar
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    Hi Wend;

    Good luck with any trial.

    Iceland is a very cool place, I went there in 1979 on my motor bike.

    Not sure how disabled friendly it is but you can mostly trust what they say.

    Love Terry

  8. #28
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    Hi Wend, I am so sorry you find yourself here, and also for your family and friends.
    I am the mother of a 33 yr old beautiful woman who began symptoms within months of having her second child she was diagnosed in Sept of last year.
    Personally i have not and never will come to terms with the diagnosis, this disease has robbed her of the joy of bringing up her children just doing normal things like taking them to school or the park, her enjoying her former job and her colleagues. They miss their Mum! There is not a day gone by that I don’t break down in tears.

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