Announcement

Collapse
No announcement yet.

Newbie

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

  • Tabbycat
    replied
    Tr33na welcome to the forum. I was also diagnosed last year.

    Leave a comment:


  • TinyLady
    replied
    Tr33na - welcome. Glad you felt able to post and introduce yourself. I hope youvand Rob are still managing to make memories to share with your baby. Sending gentle hugs to you all xx

    Leave a comment:


  • shelly21
    replied
    Hi . I was also diagnosed may 21. Its a very huge shock. Re voice banking the new 'i will still be me' procedure was very quick. I did recording and application for funding was approved within a few days.

    Its so hard but I've decided to just think day by day. I try to find something positive in everyday rather than write a off days and weeks as bad.

    Maybe research memory book or boxes for your child.

    Big hugs though and well done for coping with all of this xx

    Leave a comment:


  • Deb
    replied
    Hi Tr33na A warm welcome to the forum.

    I'm so sorry for Rob's diagnosis. You have both such alot to cope with and I hope youre getting lots of support.

    Tale care of yourself,
    Love Debbie x

    Leave a comment:


  • richard
    replied
    Tr33na I’m so sorry to hear your news. We have a horrible illness. On this forum you can ask whatever questions you want and laugh, cry, shout and scream. We have all done it and will always be here to support you. Be sure to have lots of photos of Rob with your baby. They will be very important in years to come. I am sending you a big hug and love.

    Leave a comment:


  • Tr33na
    replied
    Originally posted by EvelynMW View Post
    Appallingly quick progress and at such a young age too. I keep hoping the experts will find a cause(s) as a cure before that seems even harder. A shame you didn't post earlier, has anyone talked to you about voice banking?

    Perhaps you picked up things to ask from this forum, there are many useful tips.

    You don't mention his mental state, so I choose to believe he is coping as well as anyone in his situation could.
    Hi Evelyn, thankyou, but we have talked about it and we are in the process of banking his voice to see if it's good enough to use. If it is, then we will continue with the subscription. And that is thanks to u all.
    I have read so many posts and gotten ideas and tips it's been an amazing help 😀

    Leave a comment:


  • Tr33na
    replied
    Originally posted by LindaB View Post
    Tr33na Hi & welcome sorry to hear about Robs' diagnosis and progression. You'll know already this is a great forum for advice & support😘
    Hi Linda, and thankyou. This forum has a been a godsend for me over the last few months. Anything I've wanted or needed to know, I come here n just read and without a doubt I find something to help 😀

    Leave a comment:


  • Tr33na
    replied
    Originally posted by Aidan in Shrewsbury View Post
    Hi Trina. Don’t think your husband seeking diagnosis late made much difference as there is no cure anyway. It does seem to be progressing vey quickly is he on Riluzole which might slow down the progression a bit. Sorry that you both have to deal with this at such a young age.
    Thankyou. Yeah he is on riluzole, 2 daily. He was put on them instantly.

    Leave a comment:


  • Piglet
    replied
    Tr33na thinking of you Trina and your husband and baby. Not sure how your coping but truly hope you have good support.xx

    Leave a comment:


  • Ellie
    replied
    Tr33na A warm welcome to the forum Trina and thanks for posting - I know how hard it can be to make the leap from the background...

    I hope Rob has good support from the various healthcare professionals.

    Love Ellie xx

    Leave a comment:


  • EvelynMW
    replied
    Appallingly quick progress and at such a young age too. I keep hoping the experts will find a cause(s) as a cure before that seems even harder. A shame you didn't post earlier, has anyone talked to you about voice banking?

    Perhaps you picked up things to ask from this forum, there are many useful tips.

    You don't mention his mental state, so I choose to believe he is coping as well as anyone in his situation could.

    Leave a comment:


  • LindaB
    replied
    Tr33na Hi & welcome sorry to hear about Robs' diagnosis and progression. You'll know already this is a great forum for advice & support😘

    Leave a comment:


  • Aidan in Shrewsbury
    replied
    Hi Trina. Don’t think your husband seeking diagnosis late made much difference as there is no cure anyway. It does seem to be progressing vey quickly is he on Riluzole which might slow down the progression a bit. Sorry that you both have to deal with this at such a young age.

    Leave a comment:


  • matthew55
    replied
    A warm welcome from me. Stay Strong. 💪😊🤗❤️xx

    Leave a comment:


  • keno
    replied
    hi and welcome
    I was diagnosed last year too

    Leave a comment:

Working...
X