Announcement

Collapse
No announcement yet.

Hi and I am confused/scared

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • shrew
    replied
    hi I am so sorry for your loss. My lovely Husband Mick passed suddenly 3/7 11 and a half month after diagnosis. I miss him every day. Life is so cruel. You take care of yourself xx

    Leave a comment:


  • Daisymeg65
    replied
    Hi all I am Gloslad wife it is with great sorrow that I say he passed away this morning very unexpectedly aged 49 he had a cardiac arrest he was so brave and was fighting this vile disease with every strength in his body thank you all for supporting my lovely husband I’m absolutely devastated 😢RIP xx

    Leave a comment:


  • Ellie
    replied
    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.

    Leave a comment:


  • gloslad
    replied
    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.

    Leave a comment:


  • Ellie
    replied
    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.

    Leave a comment:


  • Barry52
    replied
    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 doesn’t 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

    Leave a comment:


  • Lynne K
    replied
    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

    Leave a comment:


  • Helen82
    replied
    So sorry to hear of your PLS diagnosis. We’ve only been dealing with PLS for a short time (just over a year - it’s my mum who has it). It’s 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 she’s ready? Mum is also going to go to support meetings and I’m hoping these will be helpful to her too. There is so much help and support out there and I’d 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.

    Leave a comment:


  • Terry
    replied
    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

    Leave a comment:


  • Kayleigh
    replied
    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

    Leave a comment:


  • Gillette
    replied
    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.

    Leave a comment:


  • Ellie
    replied
    Oh Glos, I am so sorry and can understand why it's all a blur for you and probably for your wife too.

    It'll take a while for it to sink in and the fog to clear, so I won't overwhelm you by saying anything else for now except that we're here to help and support you both.

    Big hug.

    Love Ellie.

    Leave a comment:


  • gloslad
    replied
    Saw Prof Turner, a lovely guy, he has diagnosed PLS which ,although not unexpected, to hear the words was a hammer blow. Saw a nurse afterwards who was also lovely, but to be honest was all a bit of a blur. Back to see him again 3 months time.

    Leave a comment:


  • Kayleigh
    replied
    Dear Gloslad,

    I hope everything went well at your appointment this afternoon. Hopefully the neurologist had some answers for you and will be helpful in quickly finding a diagnosis for your symptoms, if one hasn't been found yet.

    Best wishes to you and your wife,

    Kayleigh

    Leave a comment:


  • Doug Carpenter
    replied
    All fingers crossed for you today.

    Whatever happens, you're talking to the right guy.

    Doug

    Leave a comment:

Working...
X