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  • Shirl
    Forum Member
    • Jan 2021
    • 28

    New to it all

    Hi All. Diagnosed last week with ALS. Bad news to take. We cried as a family but now got our positive heads on. I’m determined to make the very best I can out of this situation. Starting with talking to people like yourselves.
    Know it’s going to be a very different kind of life but think I will be able to cope more just knowing as much as possible about this condition. Am trying to face it head on - think that’s my way of coping .
  • denise
    Forum Member
    • Jun 2020
    • 6688

    #2
    Oh shirl
    I'm so sorry to hear your news. My husband was diagnosed 1 1/2 years ago. Everyone seems to have a different way of dealing with it. Some make plans and some take each day at a time. The thing being everyone gets a different variation. My husband just let's me worry about the whole thing and is pretty much is dependent on me. It started in his hands, they are nearly useless, and it's going up his arms.
    you will find lots of advice and friends here. Ask anything you like we cover all kinds of subjects. We laugh and cry and pull our hair put but we all care for each other.
    love and hugs Denise xxx
    when i can think of something profound i will update this.

    Comment

    • Bowler
      Forum Member
      • Jun 2020
      • 3575

      #3
      Hiya Shirl, welcome to the forum where there is always someone who will try to offer advice / solutions

      Comment

      • matthew55
        Forum Member
        • May 2020
        • 5794

        #4
        Welcome to the real losers club. Difference is we laugh our way to doom. Just kidding nice to have you here. 😁x
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

        Comment

        • jd58
          Forum Member
          • Jun 2020
          • 327

          #5
          Welcome to our community forum

          Comment

          • Barry52
            Forum Member
            • Mar 2012
            • 1523

            #6
            Welcome Shirl.

            I admire your spirit so soon after diagnosis. The journey you are on will be so much better with our forum family to guide you through.
            I’m going to do this even if it kills me!

            Comment

            • Lizzie
              Forum Member
              • Feb 2020
              • 153

              #7
              Hi Shirl, and welcome to our forum. I was diagnosed with bulbar onset a year ago. You’ll have good days and bad, but there is always someone here who will understand how you’re feeling. Love, Lizzie 😌

              Comment

              • Gordan1111
                Forum Member
                • Jan 2021
                • 575

                #8
                Hi Shirl x

                Comment

                • GaryM
                  Forum Member
                  • Aug 2020
                  • 797

                  #9
                  Welcome to the forum Shirl. No one wants to be here but we all help each other along. You'll have good days and bad days, we all do.
                  Each day is made easier with a bit of humour.

                  Comment

                  • Beemer
                    Forum Member
                    • Jan 2020
                    • 228

                    #10
                    Welcome Shirl,
                    MND affects people differently I have discovered. How has it affected you?
                    You may find better advice if you can talk to someone with a similar start to you.
                    Welcome.
                    Diagnosed 2nd Jan 2020
                    Both arms/shoulders affected, left worse than right.
                    Progressive Muscular Atrophy suspected

                    Comment

                    • Deb
                      Forum Member
                      • May 2018
                      • 2166

                      #11
                      Hi Shirl and a warm welcome to the forum,

                      I am so sorry for your diagnosis, It's such a shock and the early days are overwhelming so well done for posting so soon. It sounds like you have a really positive attitude and a close family which will really help you.

                      Its even harder in COVID times when you can't see people or maybe access the support you need. The forum is a really good place for friendship and help from people who really understand.

                      Take Care of yourself,
                      Love Debbie x

                      Comment

                      • SueM
                        Forum Member
                        • Nov 2020
                        • 99

                        #12
                        Welcome to the forum Shirl, it’s really hard to get your head around such a diagnosis, as Beemer mentioned we all come with very different symptoms and problems so there is a wealth of experience to dip into.
                        Take care
                        best wishes Sue

                        Comment

                        • Lynne K
                          Forum Member
                          • Nov 2017
                          • 2614

                          #13
                          Hi Shirl, I’m sorry about your recent scary diagnosis. You sound like a positive warrior and that’s the best that you or anyone else can do. I hope that your talks with family and friends go alright and that you have lots of support. Lynne
                          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

                          • richard
                            Forum Member
                            • Aug 2020
                            • 768

                            #14
                            Welcome Shirl to the group no one wanted to join. It is devastating when you are first diagnosed. Happy dreams and plans evaporate into concerns, worries and sadness.

                            Here you can ask whatever questions you want, shout, scream, cry and laugh. We have all done it. You will get all the help you need here.

                            Take care and keep smiling

                            Richard
                            Richard

                            Comment

                            • Shirl
                              Forum Member
                              • Jan 2021
                              • 28

                              #15
                              Hi all. Thank you so much for your supportive posts. My symptoms started 1 year ago with loss of balance in right leg only noticeable when at yoga I could no longer stand on that leg for any length of time. Few months later , whilst I loved hiking , walking started to become a chore. By May last year right foot started to stiffen up and seemed to trip a few times. June contacted by GP who sent me straight for scans, Neurologist within 4 weeks, then every test going. Started IVIG in November for 2 months - just incase I had MMN. Sadly I didn’t - and officially diagnosed last month with MND - ALS. Am now in a wheelchair - 12 months from first symptom to wheelchair - feels like no time. Off for my first visit to Marie Curie team - let the adventure begin. Love to you all ❤️

                              Comment

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