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Clementine

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@clementine

I’m sick of this existence already and only diagnosed in the last month, although living with this progressively for six months. Cried yesterday, it me an hour to change my bedsheets, cried today because I can no longer tie my hair up. I wonder what I will cry about tomorrow or maybe later today! I’m sick of this existence. I Only have the use […] View
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    Clementine replied to the topic Living Longer with ALS in the forum Living With ALS 1 year, 8 months ago

    Hi Chuck, reading your contribution stirred lots of emotion for me. I have had symptoms for a year, officially diagnosed six weeks ago. March this year I was running round the fields, now I struggle to walk to the bathroom. I too led a very active life prior to this heinous disease. I can relate with you with regards to limited movement, as I have…[Read more]

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    Clementine posted a new activity comment 1 year, 9 months ago

    Hi Dagmar, thank you for your kind words and insight, means a lot. You look so good in your photographs, I am impressed. Am I right that you have been living with a LS for 10 years did you say? I was given the impression that so few people live past three years and the quality of life after that is very depressing being wheelchair-bound but you…[Read more]

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      Dagmar Munn replied 1 year, 9 months ago

      Hi Clementine,
      Thank you for your compliments 🙂 Yes, I am in my 10th year of living with ALS. I had symptoms in the summer of 2000, and by December of that year I had my diagnosis. I too, dreaded the thought of ending up in a wheelchair and on oxygen… but, I was able to turn my mind around and follow what I thought was the best way to ward…[Read more]

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    Clementine posted an update 1 year, 9 months ago

    I’m sick of this existence already and only diagnosed in the last month, although living with this progressively for six months. Cried yesterday, it me an hour to change my bedsheets, cried today because I can no longer tie my hair up.
    I wonder what I will cry about tomorrow or maybe later today! I’m sick of this existence. I Only have the use…[Read more]

    • Profile picture of Dagmar Munn
      Dagmar Munn replied 1 year, 9 months ago

      Clementine – – I hear you and understand your frustration and anger. We pALS have all hit that mental wall of wondering “why bother?” and “what’s the purpose?” But you are right now in a very vulnerable time period – – at 6 months in with symptoms and being diagnosed last month. It’s the turning point of letting go of the way you moved, how you…[Read more]

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        Clementine replied 1 year, 9 months ago

        Hi Dagmar, thank you for your kind words and insight, means a lot. You look so good in your photographs, I am impressed. Am I right that you have been living with a LS for 10 years did you say? I was given the impression that so few people live past three years and the quality of life after that is very depressing being wheelchair-bound but you…[Read more]

        • Profile picture of Dagmar Munn
          Dagmar Munn replied 1 year, 9 months ago

          Hi Clementine,
          Thank you for your compliments 🙂 Yes, I am in my 10th year of living with ALS. I had symptoms in the summer of 2000, and by December of that year I had my diagnosis. I too, dreaded the thought of ending up in a wheelchair and on oxygen… but, I was able to turn my mind around and follow what I thought was the best way to ward…[Read more]

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    Clementine and Profile picture of Danielle UskovicDanielle Uskovic are now friends 1 year, 9 months ago

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    Clementine replied to the topic Living Longer with ALS in the forum Living With ALS 1 year, 9 months ago

    Good evening to everybody from the Cotswolds in the UK.

    I am a brand new member and unfortunately qualify as diagnosed with MND officially three weeks ago. I however had noticed ‘signs’ approximately 12 months ago which very slowly progressed to January this year, whereupon I had a flu virus, not sure if Covid or not However, after this time I n…[Read more]

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    Clementine became a registered member 1 year, 9 months ago

    • Profile picture of Dagmar Munn
      Dagmar Munn replied 1 year, 9 months ago

      Hello Clementine,

      Welcome to the forum! I am one of the forum moderators, as well as a person who is also living with ALS: I was diagnosed in 2010.

      If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or…[Read more]

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      Amanda replied 1 year, 9 months ago

      Hello Clementine, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I l…[Read more]

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