Tips for Keeping Up with the Latest MS Info
Last updated: May 2021
It is quite a struggle some days to stay current on the latest studies, webinar presentations, and newly-released MS disease-modifying therapies. As a patient advocate, I want to keep up on these so I can share information with the MS community.
Why I'm falling behind on the latest MS news
Although I am medically retired and have a pretty flexible daily schedule, I find myself falling farther behind with each passing month. Here’s my take on why.
- The sheer volume of new information has grown exponentially over the past few years.
- Lately, disease-modifying drugs that sat in the pipeline for years are being swiftly FDA-approved, sometimes several at a time.
- More experts in physical fitness, nutrition, and mindfulness are reaching out to online MS communities to offer their guidance and services, adding more MS treatments I should track.
- The variety of information sources has grown to include podcasts, webinars, YouTube videos, subscriptions to aggregator sites, and more.
- Living with MS limits the number of hours I can spend reading, writing, and attending webinars and teleconferences.
This ever-increasing stream of data creates information overload, making it difficult to focus. However, my biggest source of frustration comes from within.
It is hard to admit to myself that I’m only good for three hours a day before my brain freezes and I have to collapse in my recliner. It is why I had to retire from working full time and take up freelancing as a patient advocate. The combination of reduced stamina and focus along with an increased information load leaves me feeling less able to absorb, process, and share.
So here are some methods I use to capture and retain information with the least amount of tedious, repetitive labor.
1. Limit daily reading to a few subscriptions
These are aggregator sites that compile articles about the latest MS news and email them to me. Here are some of the good ones I use.
- MS News Today
- MS Healthline
- Medical News Today
- Consortium of Multiple Sclerosis Centers (CMSC)
- MS Views & News
Two additional sources I find valuable:
Youtube videos presented by Dr. Aaron Boster, an MS specialist practicing in Columbus, Ohio. He shares his take on MS medications and everything else MS on a level that patients can understand.
KevinMD presents articles written by doctors and nurses about every aspect of medical care. Health care issues discussed from the perspective of our professionals gives me some insight into my doctors’ challenges and heightens my awareness and compassion for the people that take care of me.
MS News Today comes daily, and others not that often. I don’t always read everything I get, but I can retain the emails for later. Which brings me to the next challenge—organization.
2. How to get organized
Electronic data is just as unruly as paper. My couch is covered with manila folders and documents and my in-basket is overflowing. With electronic data, my virtual couch, a.k.a. computer desktop, is cluttered as well. I struggle to make folders and save articles to them by topic, but it’s become a necessity. Unfortunately, that has created the problem of where to store them. I use several locations.
- Save articles and folders to Bookmarks and Other Bookmarks. I use Google Chrome.
- Save emails to topic folders within the app. I use Yahoo.
- Store files in the cloud. I use Dropbox and just started using OneDrive.
- Save articles I’m writing on my desktop, then transfer them to a folder when they’re finished to get them off the desktop.
- Save to flash drive as needed.
How do you organize your MS information?
Of course, this is a work in progress. It’s housekeeping, and I suck at it. I’d rather do something more interesting or fun than organize files or update and delete stuff that’s no longer needed.
How do you organize your electronic data? Please share your tips, we could all use some fresh ideas.
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: