Announcement

Collapse
No announcement yet.

New Member

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

    New Member

    Hi everyone. My name is Tony and I’d like to introduce myself. I was diagnosed a couple of years ago but I’d started to notice odd little symptoms well before that. I kept telling myself it was nothing serious, turns out it was.

    My main issues at the moment are upper limb weakness. So although I do not have difficulty eating or swallowing getting the food from the plate to my mouth is a real challenge. I can still walk although not very far and have real difficulty with steps and stairs. I have recently acquired a power wheelchair which is proving to be a great benefit.

    I know that many of you are facing greater challenges right now and I’m just grateful that at the moment I can still extract some enjoyment from life. If that is also true for you then may it long continue.


    #2
    A warm welcome to the forum Tony - nice to hear from you.

    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


      #3
      Hi Tony. Sounds like you have a very similar form of MND as mine. Stated in my left arm and I didn’t think it was anything serious just could lift less weight in the gym and thought it might be a pulled muscle in my arm. Boy was I wrong about that. Stayed like that for a few months before progressing to hands other arm and legs. Still getting around with stick and rollator but no doubt powered wheelchair will be next. Trying to get as much out of life as possible but not finding it easy.

      Comment


        #4
        Getting food to my mouth is very difficult for me too. Once there I'm OK.
        Also, I can't walk far.
        My home is no good for wheelchairs so I just have a folding push one for things like appointments.
        Welcome, Tony.
        It's all funny

        Comment


          #5
          Hi Aidan. Sounds very similar although mine started in my right arm. Difficulty throwing tennis ball up to serve then one day went to pick up a bag of shopping…well it progressed from there. As you say it’s difficult at times. All the best to you.

          Comment


            #6
            Hi Tony 👋👋👋
            Foxes Never Quit 💙

            Comment


              #7
              Welcome Tony
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

              Comment


                #8
                Hiya Tony. Wheel your chair up to the camp fire, ask a carer to pour you a drink and join the party.
                Hi, I'm Eddie.
                Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
                Still walking and talking, and wondering what the future will bring.

                Comment


                  #9
                  Tony welcome to the forum & a great group of people....look forward to reading many more of your posts😉👍🏻
                  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


                    #10
                    Hello Tony - welcome to the group. I also denied/ ignored my symptoms for a long time. They make themselves too obvious to be ignored now. But I can still sunbathe with a good book 😀
                    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


                      #11
                      Tony welcome! I ignored my odd symptoms for ages. Best thing I ever did because I could live with those strange occurrences in true blissful ignorance. There’s plenty of enjoyment to have after diagnosis and as the disease progresses. There’s a lot of support and care in this forum- glad you’ve joined us
                      Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

                      Comment


                        #12
                        Tony welcome Tony. I am a carer for my husband, he is in his 5th year since diagnosis. He started with weakness in hands and arms and now requires assistance with various personal care but he is still walking short distances which is great.
                        wishing you all a fulfilled life as much as possible xx

                        Comment


                          #13
                          Tony a warm welcome.
                          Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive 😺.

                          Comment


                            #14
                            Hi Tony and a big welcome. I think the time not knowing is bliss. I am having better days now I'm facing the many alterations to our small home.
                            X
                            Diagnosed May 2021 bulbar onset als.

                            Comment


                              #15
                              Hi Shelly

                              its not easy is it. Acceptance is obviously the only option and, for me anyway, living in the present as much as I can. Enjoy what you can enjoy

                              Comment

                              Working...
                              X