ALS Support Groups Are Going Online

ALS Support Groups Are Going Online
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Last week, I joined about 20 other ALS patients in attending an online meeting on Zoom. While the speaker scrolled through her slide program, I thought, “Wow, no parking lots! We’re all here and no one had to deal with a parking lot!”

Maybe I should explain my negative association of group meetings and parking lots.

When I was director of a hospital wellness program, one of my job duties was to speak to the many support groups in our town. Meetings were often held at night in the community room of a church, bank, or hospital. And although I spoke to different groups on a variety of topics, one thing remained the same: I had to deal with parking lots. Which in Iowa, were often slippery from ice, covered in snow, or wind-whipped with rain. As I trudged through the slush to the building’s entrance, I’d wish for an easier way to hold group meetings.

Years later, as we embraced personal computers and were introduced to online meetings, I guess you could say my wish was granted.

Going online

My first experience with an online meeting happened four years ago, when I was invited to be a guest speaker for an ALS support group. This particular ALS Association (ALSA) chapter encompassed the three states of Minnesota, North Dakota, and South Dakota, and had been using online meetings to help cover wide-open spaces that separated patients from one another.

Amazed, I sat at my computer in Arizona and chatted with other ALS patients who were many miles away.

I liked the experience so much I told my Arizona ALSA care coordinator about it and suggested we do the same thing. We agreed that since several other patients, including me, lived outside the Tucson metro area where meetings were held, an online option would be appreciated.

On our first attempt, a laptop computer sat on a chair and I was Skyped in. I watched the guest speaker along with the other attendees. But when the laptop’s assigned minder left to help with refreshments, I was forgotten and spent a half-hour hearing voices and staring at a blank wall.

All in all, it worked out fine. Hiccups are just part of the learning curve.

Finally widely accepted

Fast-forward to our “new normal,” and many support groups are literally zooming to go online.

One ALSA care coordinator shared with me that having online groups are helpful. For example, newly diagnosed patients might be too overwhelmed or intimidated to show up to an in-person meeting. But with an online option, they can ease in slowly and get to know the group.

Other ALS-related organizations also have increased their online presence with webinars on research, treatments, and patient Q&As about medical issues. I’ve enjoyed webinars from the Northeast Amyotrophic Lateral Sclerosis Consortium and the ALS Therapy Development Institute. A fairly new organization called EverthingALS has been offering monthly webinars on a range of interesting topics.

There’s not enough time to watch them all! Thank goodness they are recorded.

Always be aware

Do remember that scammers still exist, and many have migrated to producing their own webinars, support groups, and YouTube videos. Make sure to:

  • Check the credentials of the presenter or organization.
  • Be cautious when the topic or speaker professes to know a “cure” for ALS.
  • Be careful when offered medical advice without the source knowing your health history.

Go ahead and try it

Support groups are a great forum to share problems, issues, useful ideas, and even humorous moments. And they are educational — many support groups continue to have guest speakers sharing new developments in ALS-specific areas or related fields. By continuing to hold online meetings, support groups can also help dissipate the feelings of isolation that can arise from sheltering at home during the pandemic.

Plus, we may be doing this for a while.

Expect it to be a positive experience and do whatever you can to support that expectation. And look on the bright side: At least for now, we don’t have to deal with parking lots. Remember, I believe we can 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 Services, and are intended to spark discussion about issues pertaining to ALS.

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One comment

  1. Edwin C Rocabado says:

    What I enjoy about “Zooming” is that I can elect to have camera off and not worry if I am scraggly that day.

    I participate in bible studies 9one as early as 6:30 on Saturday mornings), PTA board activities (yes we have business to attend to over summer even in this pandemic, in addition to ALS related chats/lectures.

    My fear is when things settle, organizers will elect an “either-or” mindset. A hybrid format should become a staple for in-person meetings. Let’s keep Zooming. I have never been less busy. With our condition, getting to and from anything requires soo much extra effort that virtual meetings level everything off.

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