Announcement

Collapse
No announcement yet.

New to the forum

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

    New to the forum

    Hi everyone, I’m Teresa, had slurred speech since Oct 21. Diagnosed bulbar onset June 22. Have banked voice, speech is not great and some swallowing issues. Just trying to find my way around x

    #2
    Welcome to the forum Rosie - sorry you ended up with that diagnosis but this forum is a great source of information and support x
    Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

    Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

    Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

    Comment


      #3
      Rosie A warm welcome to the forum Teresa.

      Thanks for taking the plunge and making that often difficult first post.

      You seem to have your head screwed on and be on top of things πŸ‘ Look forward to getting to know you and perhaps join in on the banter, quizes and laughs, as well as having a safe space in which to have a rant or a weep with people who really understand what you're going through.

      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.

      ​

      Comment


        #4
        Hi Teresa πŸ‘‹πŸ‘‹πŸ‘‹πŸ‘‹πŸ‘‹
        Last edited by JamesW; 28 July 2022, 14:32.
        Foxes Never Quit πŸ’™

        Comment


          #5
          Hi Teresa, welcome xx
          Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

          Comment


            #6
            Hi Teresa and welcome aboard. I am also bulbar onset. You will find so much experience here and tips etc.
            its a tough journey but for me the forum has been a lifeline x
            Diagnosed May 2021 bulbar onset als.

            Comment


              #7
              Welcome to the forum Rosie.
              Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive 😺.

              Comment


                #8
                Hi Teresa
                welcome to our place to hang out.
                denise xxx
                when i can think of something profound i will update this.

                Comment


                  #9
                  Hi Teresa. Welcome to our forum.xx

                  Comment


                    #10
                    Hello, and welcome to the forum πŸ€—

                    Comment


                      #11
                      Hello Rosie and welcome. Look forward to hearing more from you. xx
                      Bulbar onset diagnosed Nov 21. No speech but limbs ok so far.

                      Comment


                        #12
                        Thank you all for the lovely welcome. I can see there is a wealth of knowledge to be gained from everyone on here. I have to confess to feeling quite scared at the moment, it’s the uncertainty and the not knowing what and when things will change for me, at least now I am in the company of people in the same position as myself and I look forward to getting to know you all. xx

                        Comment


                          #13
                          Hi Rosie sorry to hear you are newly diagnosed, its a really difficult time and all very overwhelming, especially at the beginng. That's great that you've been able to bank your voice and hopefully you have a speech therapist who will also look at your swallow and give you advice about consistency and thickeners for liquids.

                          ​​​​​My dad had first signs of slurred speech in May 2020, diagnosed may 2021 with bulbar onset. I find the worst bit is the not knowing what will happen next and when. Until recently no one would comment on progression. The physio has now said that his is fairly slow for bulbar onset so whilst he has his challenges he still has his mobility and his sense of humour so I'm trying to focus on the positives more rather than constantly worrying about what's next.

                          There are loads of great people on the forum for advice, to listen if you're having a bad day or for banter which will make you laugh (for example escape plans involving chinocks and torture methods for those less than helpful health care 'professionals'!)
                          ​​​​​

                          Comment


                            #14
                            Hi Teresa Rosie Not a nice beginning. We met a 92 year old who got diagnosed very recently. Already unable to speak. She uses a write/rewrite board, but as her eyesight is poor, her writing is hard to read. She said the board only cost about Β£5! Very useful, and inexpensive. She wouldn't drink in front of others, it was too hard.
                            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.

                            Comment


                              #15
                              Hi Rosie lots of support here, both shared experiences and practical wisdom ( Ellie is the oracle) Tough to deal with an illness that has, still, only management of symptoms and no effective treatments...but, you can live each day positively if you can adapt as you go along. x

                              Comment

                              Working...
                              X