Announcement

Collapse
No announcement yet.

Hi :)

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

    Hi :)

    Hi all. I’m Alex. I'm 30 years old and I was diagnosed with ALS a few months ago. My first symptom was muscle twitching, which started at the end of 2020 and gradually got more severe, but I'm mostly used to that at this point.

    At the start of summer I started experiencing weakness in one of my hands, which has gradually spread to my arm and now also affects my other hand and arm to a lesser extent. While the twitching affects my whole body, I have thankfully not started experiencing weakness in other areas yet.

    I think I have been a bit in denial since my diagnosis but it’s getting to a point where it’s harder to ignore and I need more help from my (very supportive) partner. I am trying not to worry too much about the future but it’s difficult at times.

    I thought it might be good to try to connect with other people in a similar situation so here I am. I’m also curious if there are any other people around my age on here.

    Thanks,

    Alex

    #2
    Hi Alex
    i started in my right arm and now have it in both arms and hands.
    it takes a bit of coming to terms with.
    welcome
    It's all funny

    Comment


      #3
      alexph
      Forum Member
      alexph A warm welcome to the forum Alex, sorry you've had to join us, especially at 30yo.

      Riluzole reduced my twitching significantly - are you taking it?

      Are you having difficulty using a phone or PC?

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

      Comment


        #4
        alexph
        Forum Member
        alexph sorry that you’ve had to join us on this horrid journey at such a young age. I hope that you are slow progressing. Lynne x
        ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

        I'm staying positive and taking each day as it comes.

        Comment


          #5
          keno
          Forum Member
          keno Hi. That’s quite a similar progression to mine so far. I hope it stops there for a while for both of us. It’s definitely hard to come to terms with and I really struggle with the uncertainty, but I suppose at least it leaves some room for hope.

          Comment


            #6
            alexph
            Forum Member
            alexph hi. Am so sorry you have had to join the forum. And at such a young age. I don't know if there are any others with similar age on here but am sure they will pop along and reply sometime if so. I also hope that u can find the forum a supportive helpful source. Members are a very friendly lovely group which you will find also. Again welcome and am sorry for the need to be here. Xx

            Comment


              #7
              Ellie
              Forum Member
              Ellie hi Ellie. Thanks for the welcome. I am taking Riluzole but I don’t find that it helps with my twitching unfortunately.

              My typing on a physical keyboard is much slower as some of my fingers don’t straighten anymore and get in the way. I am still pretty quick typing on a phone with my thumbs (which I am doing right now). I spent some time looking into voice control for my Mac but I’m having an issue enabling it. I’m going to try to get support from Apple to figure it out.

              Comment


                #8
                alexph
                Forum Member
                alexph You may be able to get help from Assistive Technology to find a better way of using your PC, including 'better' speech recognition. I use eye gaze but I have no speech.

                Shame about the Riluzole, some find CBD oil helps their twitching.

                I was diagnosed 3 weeks after my 38th birthday, not as you as you, but the baby in my clinic for a while... xx
                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                Comment


                  #9
                  Originally posted by alexph View Post
                  keno
                  Forum Member
                  keno Hi. That’s quite a similar progression to mine so far. I hope it stops there for a while for both of us. It’s definitely hard to come to terms with and I really struggle with the uncertainty, but I suppose at least it leaves some room for hope.
                  Yes I found it hard at first
                  Mathew says take each day as it comes and I have found that helps a lot.
                  It's all funny

                  Comment


                    #10
                    Hi
                    alexph
                    Forum Member
                    alexph and welcome. Mine started with speech and right arm. Its certainly a roller coaster journey. But keep popping on the forum as it really helped me. X
                    Diagnosed May 2021 bulbar onset als.

                    Comment


                      #11
                      Welcome aboard
                      alexph
                      Forum Member
                      alexph you are in the right place for help, advice and friendship. We have all been where you are so you won't find sympathy here but plenty of empathy. 😁🤗😂🎄xx
                      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                      Comment


                        #12
                        alexph
                        Forum Member
                        alexph Hi, sorry for your diagnosis. I’ve found the people on this forum very kind and helpful. It’s good to have contact with people who have similar experiences. I hope your progression is vey slow.

                        Comment


                          #13
                          Hi Alex,
                          Welcome and sorry you have the diagnosis.I hope you are linked to health professionals who can support you?.
                          Can your work based Human Resources offer any equipment support to do your job given problems with keyboard.
                          I am retirement age and diagnosed 18 months ago.The most important thing for me was ensuring I knew who to turn to when I needed equipment, to do voice banking etc.
                          I do hope you get replies from people on forum nearer to your age .
                          Best wishes
                          Mary

                          Comment


                            #14
                            alexph
                            Forum Member
                            alexph welcome to the forum and sorry for your diagnosis. Great to hear you have a supportive partner. They can find support here too.

                            I'm sure there must be others on here a similar age.

                            Although I'm just slightly older #cough #wink - we're all just as old as we feel so I'm about 106 🤗
                            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.​​​​​​

                            Comment


                              #15
                              And I'm 7 😉😁🤗😂xx
                              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                              Comment

                              Working...
                              X