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Hello! I’m Pauline

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    Hello! I’m Pauline

    In a strange way, it feels good to be part of the MND ‘family’, even though needless to say, I’d rather not have been diagnosed with this wretched disease back in March. It’s certainly hard to get your head around, isn’t it? I know every one affected has been, or is still going through it. I’ve found one of the worst emotions - in addition to the obvious being angry, and ‘why me’ thoughts, it’s feeling guilty at what I’m going to be putting the family through, not to mention the extreme frustration at not being able to do anything about it ….
    However, having read some other posts on this forum, I know I should be grateful that mine, so far, has progressed fairly slowly. Having said that, this time last year as a fit and healthy 71 year old, I was still playing tennis and enjoying long walks. Now I”m finding even very short walks a huge effort and exertion of any kind is unbelievably tiring.
    But, I’m trying to be positive and focus more on what I can still do, not on what I can see slipping away.
    With that in mind, I decided that while I can, I want to raise as much as I can for the MNDA, so have set up a Fightback Fund, and with just my first fundraiser - a quiz set just before Christmas and sent to family and friends, many of whom passed it to others, I’ve already raised just over £860. That feels amazing and has given me something really positive to concentrate on. I’m now thinking about what I can do next. At least it makes me feel that something good is coming out of all this.
    It clearly won’t come in time for those of us who are posting now, but if it means that in some small way, I might have helped fund that vital research which eventually will lead to finding a cure for others in future, then I feel I’ve done my bit!
    So, that’s my first post to say hello!
    PS - I should also say that if anyone would like to use my quiz for their own fundraiser, I’d be more than happy to share it. I’m sure there would be ways and means …..!!
    Last edited by Pauline H; 31 January 2023, 15:03.

    #2
    Pauline H Welcome aboard the rollercoaster, Pauline 😘
    ​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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      #3
      Pauline H I also would like to welcome you to the forum. Am sorry that you find yourself here. It sounds like u have managed to think positively and have a good attitude for the future. Huge well done on the fundraising.

      I hope that you can find the forum a help and supportive place to come. Take care. X
      Diagnosed June 2022. Confirmed MND. Limb onset. Symptoms started November 2020.

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        #4
        Hi Pauline,

        Welcome to the forum. It certainly gives me comfort to come here and know that we can share my concerns and our experiences with everyone (or even just join in with some games or jokes).

        I look forward to seeing you around in the threads. Xx
        Foxes Never Quit 💙

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          #5
          Welcome to the group Pauline

          Im hoping a cure will be in our time frame, especially as many people here aren't anywhere near the retirement age .

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            #6
            Hi Pauline welcome to the forum. Glad you have joined us but sorry that you have had to. It’s good that your being positive and well done with your fundraising xx

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              #7
              Originally posted by SAMMY88 View Post
              Welcome to the group Pauline

              Im hoping a cure will be in our time frame, especially as many people here aren't anywhere near the retirement age .

              Sammy, I couldn’t agree more and certainly didn’t mean it in a negative way. The sooner the better, for everyone .
              i

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                #8
                Hi Pauline. Staying positive and focusing on what you can still do is definitely the best strategy. Best wishes.

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                  #9
                  Hiya Pauline H and welcome to the crew.
                  Well done on the fundraising. Hope to hear 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 Pauline and a warm welcome. Great that you are fund raising. Yes fatigue is the worse especially for us active ones.
                    I've learned not to fight it now.
                    X
                    Diagnosed May 2021 bulbar onset als.

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                      #11
                      Pauline H welcome to the forum, a great source of information and support. Well done on the fundraising efforts!

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                        #12
                        Hi Pauline,

                        I have a great deal of respect for someone who devotes part of his/her time fundraising for the cause. It helps everyone, present and future. It also gives one purpose.

                        Best wishes.
                        Living live on the beach. Dx 2015 ALS (limb onset)

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