• Clementine posted an update 2 years 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 of one hand can just about walk around my house but can no longer go upstairs. As soon as my other limbs start to have no function that is it I’m done I will booking my flight to Switzerland to Dignitas. No way I can continue like this, I would rather be dead, sorry guys I’m not as strong as you..

    • 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 lived, how you defined yourself… and turning the page in the chapter of your life to what is “now.” My suggestion is to take one day at a time. Think about workarounds and alternate methods instead of dwelling on “what I can’t do anymore.” I cannot walk up stairs either or style my hair the way I once used to. It’s OK to feel sad about giving up old patterns. Whenever you are ready, try coming up with one alternative method – – one a day (that works!) and use it until that becomes your new normal. Know we all felt as you do and we can help. 🙂

      • 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 look very independent and you come across as being a positive person, wish I had your strength.
        I will continue to battle through this for my daughter, although she is 23 she is still my baby and my absolute world, being a professional athlete in her sport I do not want to stop watching her compete, representing her country.
        So fingers crossed I will be here longer than my negative brain is thinking. Thank you again….

        • 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 off that wheelchair moment. Have you had a chance yet to read the (free) ebook I wrote about my 1st year? I wrote it about 5 years ago, and it is available as a PDF.


          I am happy to answer any questions you have, or share ideas, or just chat about how you’re feeling & doing. Best wishes for a good weekend ahead 🙂

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