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    Out introduction

    Hi my name is Lyn. My husband Robert was diagnosed 16 years ago with PLS. I have been on the forum before when he was first diagnosed but because his progression has been so slow have not been on for some time. He now progressed further… speech is getting worse and he is becoming very unsteady. He manages to move around the house on his Walker and we use a wheelchair outside. He is being fitted for an electric wheelchair which at the moment he does not need in the house. This of course means that we will have to think about transport and know that we can get a car with the help of our PIP. He visits Papworth every 6 months for his breathing and we have asked out dr to refer us to the care centre at Addensbrooke.

    I think we are now getting to a stage where I will need some support from the forum so this is why I am re-introducing myself.

    Looking forward to chatting with you all.

    Lyn x

    #2
    Lilyloulad it's hello & welcome from me for the 1st time. No need to tell you the benefits of the forum as you're a long time member.
    Nice to meet you...virtually👍🏻😉
    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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      #3
      Welcome Lyn and Robert. Very sorry to meet you but very glad you came back home. 🏡😁😘😍xx
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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        #4
        Many thanks look forward to chatting with you

        lyn

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          #5
          Blimey Lily that's some going 16 years, from Albert's very first fall to today we are looking at 5 years................I ask myself is the slow version better than the quicker version - pros and cons - slower version plays longer with the mind I fear
          Husband Albert diagnosed PMA Feb 21

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            #6
            Lilyloulad A warm welcome to you and to Robert.

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

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              #7
              Originally posted by Suefromwakey View Post
              ......I ask myself is the slow version better than the quicker version - pros and cons - slower version plays longer with the mind I fear
              As a person with ALS, the 'quick' version, I certainly don't know of any 'pros' to it - offer me PLS or PMA and I'd chew your arm for it... 😏 xx
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                #8
                Hi

                there are definitely pro and cons I think there have been times when Robert wished he had the shorter version.!!

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                  #9
                  Hi Lyn, I wasn’t here when your Robert was diagnosed. He’s very lucky to have a a slow version of MND.

                  Nice to meet you, and good luck for a powered wheelchair and a WAV. Love Lynne x
                  Last edited by Lynne K; 5 November 2021, 15:39.
                  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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                    #10
                    Welcolme back Lilyloulad and Robert

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                      #11
                      Lilyloulad Hi Lyn, sorry you have had to return. I'm a new member so still finding my way around but have found it very welcoming and informative

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                        #12
                        hi lyn and robert

                        nice to hear from you again. i hope you join in and fine comfort here. we have tears and laughter and we are one big happy family.

                        love and hugs
                        denise xxxxxxxx
                        when i can think of something profound i will update this.

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                          #13
                          Lilyloulad Welcome back, but very sorry you’re here. You’ll find lots of support here as you know.
                          Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

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