ALS News Today Forums Forums Using Our Forums As Co-moderators of the ALS News Today Forums, We Wear Several Hats

  • As Co-moderators of the ALS News Today Forums, We Wear Several Hats

    Posted by Dagmar on January 24, 2022 at 2:34 pm

    Recently, I wrote this column describing my many duties as co-moderator of this forum. Amanda and I agreed that it gives a good picture of what we both do on a daily and weekly basis. This is written with a humorous eye – – and we hope you enjoy this “behind the scenes” peek at our co-moderator roles 🙂
    “Most folks know me through my column, “Living Well With ALS,” and perhaps don’t know that for the past three years, I’ve also been a co-moderator of the ALS News Today Forums. I thoroughly enjoy this responsibility, and to bring a bit of levity to this online job, I often imagine the various hats I’m wearing for each task.

    I share moderating duties with Amanda, a school psychologist in Florida. I have sporadic ALS, and she lives with a hereditary predisposition to ALS in the form of a genetic mutation, so between us, we share our personal knowledge of the disease.

    As good forum hosts, we welcome new members, add to ongoing conversations, and help our members navigate any philosophical differences. This brings me to my hats.” You can read the full column here:

    Dagmar replied 8 months ago 4 Members · 7 Replies
  • 7 Replies
  • Amanda

    January 25, 2022 at 7:36 am

    Oh Dagmar, this article is perfect! It is clear all to often that many of our members do not know what are responsibilities are or what we do each day! What started off as a part-time job, an hour or less a day each week, has turned into something that I live for each day! I spend much more time logging on, emailing, researching and reaching out to others on behalf of our online community than I ever thought I would, and I feel every second spent is worth it!! Of course we are not experts, and we are trying our best to provide support, and a safe place for all pALS and caregivers to vent and ask questions. Thank you so much for the article and for posting it the information in the forums.

    This doesn’t even begin to touch the “extra” that we do because we care so much about our community. We volunteer our time for all the activities and events such as ALS Awareness Month, RARE Disease Day, and any other “days” that might help advocate for ALS or pALS. In addition, there are things we do behind the scene “just because” we feel it will support a cause that we believe so deeply in, advocating for ALS and pALS.

    The most precious, and vital part of what I get to do for ALS News Today is build relationships. Many of the members have become friends on the forums and outside. Some on social media, some we speak on the phone from time to time and some through email. Often times it starts off with a question or a simple comment. Then somehow a wonderful friendship develops. I learn so much from my expanded circle. I get so much more from my friendships than I could possibly receive.

    Dagmar, once again, THANK YOU! You continue to inspire me personally and professionally.


  • Karl Schachtner

    January 26, 2022 at 5:12 am

    Well my hat’s off to both you and Amanda for the job you do! I always enjoy perusing the posts and replies here in this forum, and the excellent moderation you both provide is a big part of it.
    Thank you!

    • Amanda

      January 31, 2022 at 9:44 am

      Thank you!! It’s very nice to get to know our community members. I learn from something new every day!

  • Kathy stitz

    January 26, 2022 at 6:46 am

    Amanda and Dagmar, thank you for all that you do to help and support pALS and their caregivers!

    • Amanda

      January 31, 2022 at 9:46 am

      Hi Kathy!! And thank you!!

  • Amanda

    September 21, 2023 at 8:03 am

    So, my role as a ALS community member and a moderator seem to be constantly changing. Since being diagnosed with ALS last December, I’ve been on an emotional roller coaster with medication approval, finances, and trying to keep a positive attitude. I’m sure many of you can understand those challenges. Ugh!! At times, I just want to scream at the top of my lungs, “I want off this ride!!” (this is hard since ALS has mostly effected my diaphragm).

    So, I try hard to focus on what I have and can still do, which is a lot!! I’m still working, walking, talking, and living independently although much slower with several falls. I also try to find the good or the benefit of each situation. Although I would prefer not to have a genetic mutation, or ALS, I do believe that having both has allowed me to understand and empathize with our forum members to a greater degree. Again, I would have preferred to stay a pALS supporter and advocate, but that is not my path. I always knew that in some way, so I’ve been preparing myself for decades that this was going to be my reality. Another plus, I’ve had to dig deep to find good things about this situation! :), since I have the genetic mutation I have been able to volunteer for medical research, which I continue to do. I’ve volunteered for 4 so far. Some just collect information, some to testing and some monitor my muscles and nerves. Now I’m on the conditionally approved QALSody.

    All of this helps me be a better moderator, at least I think that is true. I even think I am a better person because of this experience. If you ever have constructive feedback I’m all ears. Just send me a private message and I will do my best to learn, adapt, adjust and accommodate.



    • Dagmar

      September 21, 2023 at 11:32 am

      Amanda, we appreciate what you do as a moderator – – I especially appreciate sharing moderator duties with you – – as you have taught me some of your wonderful people-skills. Your having been a moderator for the past several years prior to your ALS symptoms appearing has given you a window into what pALS experience. Now that your symptoms are visible and having an impact on your daily living, your honest and insightful posts updating us, are now equally helpful – – to us all. No one expects to have their life impacted by ALS, but “we are in it together” and together we can be of support to each other. You are appreciated!

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