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    Newbie

    Good evening to u all. Thankyou for having me apart of Ur lovely group that I have read for months but only just built the courage to register and post.
    hi all, my name is Trina, my husband Rob was diagnosed may 2021 with MND it was a terrible shock only being 36, amd having a 6mth old baby. His first symptoms were his arms felt like he had a stroke for a long time before he seeked medical attention (his very stubborn) finally we got the answers. It's a very emotional ride these past 10mths. In 10mths my husband has gone from completely mobile, independant, and working, to completely dependent on me, feeding, toilet, showering, no mobility what soever. His voice is almost gone. I'm so scared we don't hav as much time left together as we thought we may have had. I look forward to getting to know u all and Ur stories ❤❤❤❤

    #2
    Hi Trina 👋 x
    Foxes Never Quit 💙

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      #3
      hi and welcome
      I was diagnosed last year too
      It's all funny

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        #4
        A warm welcome from me. Stay Strong. 💪😊🤗❤️xx
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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          #5
          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.

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            #6
            Tr33na Hi & welcome sorry to hear about Robs' diagnosis and progression. You'll know already this is a great forum for advice & support😘
            Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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              #7
              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.
              Mum died with MND in 1979 – My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.

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                #8
                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
                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                  #9
                  Tr33na thinking of you Trina and your husband and baby. Not sure how your coping but truly hope you have good support.xx

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                    #10
                    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.

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                      #11
                      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 😀

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                        #12
                        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 😀

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                          #13
                          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.
                          Richard

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                            #14
                            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

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                              #15
                              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
                              Diagnosed May 2021 bulbar onset als.

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