Newbie

[Tabbycat]

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

[TinyLady]

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

[shelly21]

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

[Deb]

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

[richard]

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.

[Tr33na]

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 😀

[Tr33na]

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 😀

[Tr33na]

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.

[Piglet]

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

[Ellie]

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

[EvelynMW]

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.

[LindaB]

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

[Aidan in Shrewsbury]

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.

[matthew55]

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

[keno]

hi and welcome
I was diagnosed last year too