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    Hey...New forum member.

    Hi all...been trying for three days to be able to post. Finally today. Wasn't a club I was keen to join but here I am.
    ​​​
    Already read a lot of posts and seems a great space to share info advice and such.

    I'm 62 been having various tests for about a year. Diagnosed last Friday...I knew it had to be MND as all the classic symptoms.

    Anyway will add more now I can access.


    Plan for the worst hope for the best or words to that effect.

    Linda
    ​​​​​​
    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

    #2
    LindaB A warm welcome to the forum Linda - sorry about your diagnosis, but you're amongst friends here, people who know what you're going through.

    May I congratulate you on figuring out how to make your signature so early on 😍

    Love Ellie.
    Last edited by Ellie; 8 June 2021, 11:46.
    ​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 Linda sorry to welcome u here ,, keep a positive mind and be strong 💪 u will get all the support from all the lovely people here x

      Comment


        #4
        Welcome aboard Linda but sorry you have become a member. Support and advice is given freely and we have a sympathetic ear if you just want to get something off your chest.

        Best wishes,
        Barry
        I’m going to do this even if it kills me!

        Comment


          #5
          Originally posted by Ellie View Post
          LindaB A warm welcome to the forum Lou - sorry about your diagnosis, but you're amongst friends here, people who know what you're going through.

          May I congratulate you on figuring out how to make your signature so early on 😍

          Love Ellie.
          I've had time to read the posts about a signature while still trying to post lol
          Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

          Comment


            #6
            Hello Linda, I had a deal of trouble with this forum getting posts on etc etc...........its not the easiest but you will get used to it...........just wish they'd put the spell checker on!
            Husband Albert diagnosed PMA Feb 21

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              #7
              Hi Linda, welcome to the forum.I guess your minds in a turmoil as you process the diagnosis. Hope support network from NHS will be in place soon .
              Best wishes
              Mary

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                #8
                Hi Linda, welcome here and sorry about your diagnosis. You certainly aren’t alone. Love 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.

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                  #9
                  Originally posted by Mary C View Post
                  Hi Linda, welcome to the forum.I guess your minds in a turmoil as you process the diagnosis. Hope support network from NHS will be in place soon .
                  Best wishes
                  Mary
                  Had a good response from local Neuro rehab team. So SALT & Physio are involved and home visits stated almost immediately.
                  The worst of times after initial diagnosis 7th April when my every thought was about death & dying. My biggest complaint in my area is lack of immediate psychological support. I mean in that time I contemplated 'checking out' 24\7 & sleep deprived and unable to eat added to the darkness. Like most people now I think good and bad days. For now I'm alive and kicking.
                  Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

                  Comment


                    #10
                    Hi Lynda

                    that's a good start alive and kicking. That's a brilliant attitude. It's lovely to meet you. I hope you feel very welcome here.

                    love and hugs Denise xxx

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                      #11
                      Originally posted by LindaB View Post
                      My biggest complaint in my area is lack of immediate psychological support.
                      Your local hospice should offer you counselling, amongst other therapies and services - check their website to see how to be referred, some are self-refer, others need a referral from a healthcare professional.

                      And hospices don't only deal with end of life care, but with life-limiting conditions too. xx

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

                      Comment


                        #12
                        Thanks for the welcome messages and support. I will probably post a lot...yes helps to be able to talk to people who know...hope I can add something to the mix💐💐💐
                        Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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                          #13
                          Hello LindaB and welcome to a place that no one wants to be but no one ever regrets finding. Remember we are all where you are. 😍😀😁🤗xx
                          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                            #14
                            Hi Linda and a warm welcome to the forum from me,

                            I am so sorry for your diagnosis but I'm glad you've found us. The forum is a good place for friendship and support from people who really understand. The early days are so shocking and bewildering... I hope you are able to access some counselling while you begin to come to terms with things.

                            Love Debbie x

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                              #15
                              Welcome to the forum Linda x
                              Janette x

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