Tagged: ALS, ALS and the internet, ALS association, ALS Awareness, ALS social media, clinical trials, fALS, Lou Gerhig, pre fALS
- This topic has 3 replies, 4 voices, and was last updated 1 year, 4 months ago by
Dagmar Munn.
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March 22, 2021 at 8:36 am #18135
Amanda
KeymasterI spend a considerable amount of time reading, researching and listening to information about ALS. At times, I find that there is just to much to review and sort through. It isn’t always in the best interest of my mental health to constantly be online reading about ALS regardless if it’s on the forums or reading through other websites. For me, I need to learn to place limits on things. This isn’t always easy for me because I get very engaged and soak up so much information.
Do you ever find that you are on overload from all the information? How do you sort through all of the conflicting information out there? How do you know when you need to take a break from all the websites, chats, social media etc?
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March 25, 2021 at 9:57 am #18162
Cindy
ParticipantI take breaks from reading all ThAts out there. When the cure is found all these world will know.
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March 25, 2021 at 3:21 pm #18167
Marianne Opilla
ParticipantI only skim on this website. I find it depressing and negative to read about all the research that isn’t a reality for PALs. I am waiting to hear/read something about FDA approval of Amylyx and NeurOwn, otherwise I don’t read it.
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March 27, 2021 at 11:57 am #18178
Anonymous
InactiveThe biggest issue I have is running into all the techno-babble in studies. It gets so complex that it lands far beyond my comprehension sometimes. Especially the ones that delve into DNA studies and chemical breakdowns because they are so far above my Payscale. Usually (if) I figure it out it comes from the summary. A lot of the time I can spot just a few statements that bring out the nature of the study better.
Info overload is like burnout. I ask myself if I want to concentrate on that feeling or should I just switch up to something else before coming back to the ALS topic. I like to work with AA and NA, and am also a gamer who (tries) to build PC’s. By keeping curiosity fresh it gives me an edge on staving off the burnout. When it gets bad I take a time out for days or a few weeks. When I come back it keeps it fresh…variety is the spice of life.
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April 5, 2021 at 5:23 pm #18272
Dagmar Munn
KeymasterYou bet I get overloaded 😉 As I wrote in “I Took a Vacation from ALS,” …every day, I find myself reading about ALS, writing about ALS, talking about ALS, and to top it off, I’m living with ALS!
In my case, I found that Facebook was a big source of my overstimulation and eliminating Facebook from my life for a month helped bring my mind back to calmness. Maybe you check research sites too often or have too many ALS alerts sent directly to your email inbox. Whatever is the source, your body-mind needs a break – – and when you return, you’ll be surprised at how little went on without you!
Hope this column inspires you to take a break. If you do this already, share with us the results.
What ALS-related sites are you planning to take a vacation from?
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