• Romy H became a registered member 1 year, 3 months ago

    • Hello Romy,

      Welcome to the forum! I am one of the forum moderators, as well as a person who is 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 discussions by typing a keyword in the forum’s search bar. If you have any questions, concerns, or even suggestions, just let me or Amanda (who shares co-moderator duties with me) know, and we will do our best to help you.

      Again, thank you for joining our forum – – We look forward to your comments and I look forward to chatting with you! Dagmar

      • Hello Dagmar,
        Thank you for the welcoming message. Happy to hear from you. Losing my twin was the most devastating loss I have ever suffered. Every day it is hard to be without her but I realize she would want me to face life with her memories and go on. We shared the same breath and could finish each others sentences…our voices were the same but we were told we were fraternal twins. With ALS it is imperative to know for sure but I had cleft palate and she didn’t. This is one fact that makes me believe we were not identical. I have no symptoms however and at 56 its a hard thing to face as a possibility.

        Have a lovely evening,
        Romy

        • I’m sorry you lost your sister to ALS. Hopefully, our forum and members can help you find answers to what and how we are successfully living with ALS. If you don’t find the topics or information you’re looking for, just let Amanda or me know and we can look it up.

        • Romy,
          One was to rule in or out the likelihood of you also getting ALS is to have genetic testing done. There is no test to say 100% you will or won’t get ALS, but it could provide you with more information. Has anyone else in the family had ALS or any other neurogenerative diseases?

    • Hello Romy, 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 lost my father, grandfather, both aunts, and a several cousins to ALS. My family has been volunteering for medical research for over a decade, and I believe we are getting closer to finding away to stop the progression of ALS.
      Other members are pALS, caregivers and medical professionals. Please review the ongoing discussions and join in at anytime. You are also welcomed to post discussion topics, ask questions and respond to other members. The more we share, the better we all are in this community.
      Please feel free to contact myself or Dagmar if you need any kind of assistance. Again, welcome to the forum!
      Amanda

      • Our Dad had something Neuro but it wasnt ALS. My twin lived in a moldy house for 4 years. She was an avid hiker, photographer and could hike 10 miles like me back only 2 years before she passed. There isn’t any other family with it. I am a fraternal twin so its not likely I should develop it. She was 56 when she died.

        Thank you for your kind words,
        Romy

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