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    Intro

    Diagnosed 28 June 22
    symptoms right side weakness and falls since March
    Feeling weak but still can stand and walk short distance with frame. Speech ok eating ok What else to say ? Trying to be positive but failing sometimes
    Partner and friends and family amazing x
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    #2
    Lovely to meet you Judyb but sorry it had to be because of this diagnosis. We are a very supportive bunch and loads of information is shared... quite a few laughs too. I hope you enjoy our company and look forward to hearing more from you x
    Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

    Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!

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      #3
      Hi Judy,

      Sorry you find yourself here but we are a good bunch and very supportive of each other 😊

      Look forward to seeing you around in the threads.

      James x
      Foxes Never Quit πŸ’™

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        #4
        Hello Judy and a warm welcome. The forum is my lifeline for advice etc. I'm glad you have lots of support ❀
        Diagnosed May 2021 bulbar onset als.

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          #5
          Hello and welcome Judy. You will find a lot of advice and support here. Look forward to hearing more from you. x
          Bulbar onset diagnosed Nov 21. No speech, feeding tube, limbs getting weaker but still just about mobile.

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            #6
            Judyb A warm welcome to the forum Judy - thanks for taking the leap and making that often-difficult first post.

            Great to hear you've good support and what more could you ask for than your own personal Lifeguard 😊

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

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              #7
              A warm welcome but sorry you find yourself here. Not sure I can suggest many positives but there is still life to be enjoyed, honest. Focusing on the things you can do and living in the present certainly helps. Best wishes to you.

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                #8
                Welcome Judyb, and thanks for sharing your lovely photo x
                Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

                Comment


                  #9
                  Hiya Judyb Sad to see you here, but welcome to the party.
                  Sounds like you have good people around you, and that's half the battle.
                  Looking forward to hearing more from you.
                  Hi, I'm Eddie.
                  Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
                  Full time powerchair user. Overnight NIV. PEG'ed but still eating. Voice banked but still talking.
                  Still wondering what the future will bring.

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                    #10
                    Hi Judy
                    I'm glad you have found us. Great bunch of people here and as you probably know we share everything.

                    Love and hugs
                    Denise xxx
                    when i can think of something profound i will update this.

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                      #11
                      Judyb welcome to the forum. Diagnosis causes such a roller coaster of emotions but you will always find support here for both the good and bad days. Xx

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                        #12
                        Judyb Hi and welcome. It must still be very raw for you only 4 weeks since diagnosis. It’s daunting at first but with good support from family, friends and people on this forum, you will hopefully get you through the bits that upset you.
                        Lovely photo of you both. Xx

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                          #13
                          A warm welcome to the forum Judyb.

                          I'm very sorry for your diagnosis.. everything must be overwhelming at present but things do calm down. The forum is a good place for friendship and support so it's great you've found us and posted.Good too you've amazing family and friends.

                          Take care,
                          ​​​​​​​Love Debbie x

                          Comment


                            #14
                            Welcome, sorry to hear about the difficulties and your diagnosis. It's a really difficult time but hopefully you'll get support from various medical people such as OT and physio but in the meantime there's a lot of knowledge and support available on here from a great group of people.

                            Comment


                              #15
                              Welcome to the forum. It takes a while to get your head around the diagnosis.

                              It is OK to feel sad, angry, frustrated and scared so soon after diagnosis. We all did and still do!!

                              There is loads of advice on here, but my advice is dont scare yourself reading about every topic.

                              Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicated with eye gaze

                              Sense of humour intact throughout.

                              Sadly passed away peacefully 2/9/22

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