As Co-moderator of the ALS News Today Forums, I Wear Several Hats

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.

 My hat with the ‘Ghostbusters’ insignia

When logging on to the forum each morning, I scan a list of emails requesting membership. I used to think, “Wow, it’s great so many people want to join.” But I’ve since learned that most of the emails are from scammers or bots. It’s sad that scammers try to target sites like ours that are only trying to help people living with a devastating disease. So, I relish zapping each bad actor, deleting them into the cybersphere like a ghostbuster.

Then, I happily send the valid requests a very cordial welcome.

My white cap with a big red heart

Sometimes we have new forums members who are in the early stages of neurological disease. They know something is going on, but they don’t have enough symptoms for their doctor to make a firm diagnosis. ALS is like that — there’s no quick yay or nay test.

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But feeling impatient, the new member goes onto the forum, lists all their symptoms, and ends with, “What does everyone think? Do I have ALS or not?”

I discourage members from crowdsourcing their diagnoses. Bypassing medical advice or second-guessing a physician’s recommendations is never a good idea. This may happen on other social media platforms, but certainly not in our forums.

As I’ve met and gotten to know our many members, I’ve learned that although we all have a different journey with ALS, we share the same fears, anxiety, and worries about the disease. We’re all searching for a treatment, a cure, and an answer to the question, “Why me?”

Amanda and I often step in to support, advise, and virtually hold our members’ hands. I’m so grateful she brings her psychology experience to play as members move through their diagnoses to accept that they have ALS.

My cowboy hat 

Participating in our forums should feel like meeting in a library, as opposed to a noisy coffee shop. No food fights are allowed. But on occasion, a member becomes so frustrated by ALS that they post a comment lashing out at ALS organizations, doctors, or the media. That’s when I don my cowboy hat, the one with the shiny sheriff’s badge on the front.

We have community rules in place for our forums, which help me go through the steps of diffusing these types of situations. And unlike Facebook groups, where page administrators are left on their own to deal with unruly members, ALS News Today has a manager who oversees all the rare disease forums and can give me confidence and support. It feels a lot like a football referee who can call up to the head referee in the booth for a final decision.

My hospitality hat

I’m proud the forums have become a trusted space where members can ask questions, share suggestions, and have in-depth discussions about ALS news topics. Our forums help to keep people connected. And our membership has grown! In our first year, we had 300 members. Now, we have over 1,000.

Which hat will I wear today? The one with the big smile on the front. Join us. Let’s help each other live well while living with ALS.

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Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.