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    Feeling Brave

    Hello from Scotland,
    I wrote a big message last night but it seems it didn't post (promise there were no swear words used!)

    I just wanted to say hi. My boyfriend (32) was diagnosed in January this year and it's taken a while to come to terms with this, (although we knew where testing was headed 18 months ago). I've thought about posting a few months ago, but I was far too emotional, even just reading some of the other experiences.

    He's more of a private individual and so I simply wanted to join anonymously to join the network for support and ask the many questions that I'm sure will follow.

    Left arm completely gone and 50% in the right arm, as well as a few balancing issues for now, but I know there's quite a journey ahead of us.

    Covid certainly doesn't help with extra thinking time, but looking forwards to reuniting with families when it's safe to do so.

    'Tess'

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    #2
    Welcome brave Tess Really sorry to hear of your BF's diagnosis - is he on any drug trial or starting one once things calm down somewhat?

    I remember I had butterflies in my tummy when I first posted.

    Given that his arms are affected, he should get assessed for alternative ways to use technology in case he'll need it in the future.

    Stay strong.

    Love Ellie.
    ​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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      #3
      Thanks Ellie.

      I think possibly starting one when things calm down. So much information to retain with this- overwhelming at times.

      Yes we've started some research on this, so hopefully we'll get the ball rolling sooner than later.

      Tess x

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        #4
        Welcome to the forum Tess and well done for taking this step and being brave.

        I am so sorry for your boyfriend's diagnosis. It's such a shock even if it is expected. I remember feeling totally overwhelmed by my diagnosis and by well meaning advice. We are all different and it took me a while to be able to talk about it.

        The forum is a good place for sound advice, friendship and support. You can post as often or as little as you want and ask any questions. There's usually someone who understands and can answer them.

        Take care of each other and yourself too and if you can, try to take one day at a time.
        Love Debbie x

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          #5
          I am newly diagnosed too Tess. Its been a shock but getting into this forum has been a positive step for me.

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            #6
            Hi Debbie,

            Thanks for the welcome!

            Yes it is certainly crazy how one day you can get through to the day very 'matter of fact' and getting on with things (whatever that means) as best as possible and the next minute you find yourself staring out of a window, a sad comes on the radio and all of a sudden it's all very real and you get angry at the radio presenter for even thinking a Lewis Capaldi number was appropriate...

            One day at a time. We're lucky to have a forum such as this for future questions.

            Tess

            x

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              #7
              Hi Bilvers,

              I'm sorry to hear this, such a shock to the system to say the least and with this pandemic and not allowing us valuable time with family and friends for support and to generally spend time with each other is pretty grim.

              It looks like this is the ideal support network for us all.

              Tess
              x

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                #8
                Thanks Tess. First specialist appointment at Addenbrookes Cambridge tomorrow face to face.

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                  #9
                  I hope they can give you some solid information.

                  For us right now it's trying to think 'outside the box' for each task. I wish I was a technology genius as it seems tech is the way forwards.

                  Latest gadget has been soap dispensers from Amazon for shampoo and shower gel- works a treat.

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                    #10
                    Hi Tess, welcome. I’m sorry too for your boyfriends diagnosis. It must be hard for you both. In a few weeks it’ll probably be a little easier for you since you’ll both have time to come to terms with it. I hope that BF gets all of the help that he needs. You too will need support so I hope that you have somebody to go to for tlc when you feel stressed. This forum will help too.

                    Has your BF considered voice banking yet? If not and you haven’t heard about this you could find out all about it by reading old messages. If you put ‘voice banking’ in the search messsge box lots will come up.

                    Take care, Lynne
                    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                    I'm staying positive and taking each day as it comes.

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                      #11
                      Hi Bilvers, welcome and good luck for your up and coming hospital appointment. I was surprised to hear that there’s appointments being had during this pandemic but maybe first appointments have been set as a priority. My appointment last month was done via WhatsApp video.

                      I agree about writing down a list of questions to take to the hospital with you. Then unlike me you can look and know what to ask when your head goes to mush (speaking from experience) I wrote a list then forgot to look at it. I came away not having asked all of the questions that I had planned to, oops!

                      Take care, Lynne
                      Last edited by Lynne K; 21 May 2020, 09:06.
                      ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                      I'm staying positive and taking each day as it comes.

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                        #12
                        Thanks Lynne.

                        Yes we still need to properly look at voice banking, certainly next on the to do list this week, but good to know that previous info is on here too.

                        Tess
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                          #13
                          You’re welcome Tess. Good luck, Lynne x
                          ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                          I'm staying positive and taking each day as it comes.

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