Tips for Keeping Up with the Latest MS Info

By Kim Dolce

3 min read

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.

Information overload

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
Medscape
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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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Cathy Chester Moderator & Contributor
Great piece, as always Kim. I remember when I was diagnosed there was NO information to find. Thirty-four years later it's so hard to keep up! Thankfully so. Thanks for this important and wonderful piece. Take good care and stay safe. Cathy Chester
Therry Neilsen Moderator & Contributor
Kim, I'm lost in admiration. Organization is a major disability feature for me, and I am at a complete loss to keep things organized. I'm a multi-media artist and frankly, the only way I can keep my materials organized is to have all of them out all the time, and well within arm's reach. I know it's inefficient, and I know I spend way too much energy trying to keep track of it all, but I am so far behind I can only keep physical things in clear plastic bags, and bring all of the bags with me whenever I try to do something. I've asked for help many times, but people lose patience with me and lose interest in trying to help. As for electronic organization, I use a lot of search engines trying to find it. I shudder to think what my executors are going to go through when they try to tidy up after me. And on that cheery note, I'll sign off and go make dinner. At least all the spices are in alphabetical order and the knives are in a holder on top of the kitchen island, as are all the fresh ingredients. I use phone alarms to remember to feed the cat and take my medicine. Feel free to stage an intervention. Love, Therry
casalada Member
I have what i call a "cheat sheet" with the "chemical" name of the medication next to its "brand" name, including those in development. I have them in groups: Monoclonal antibodies (12); 2nd Generation S1P Modulators (4); Fumarates (3); Tyrosine Kinase Inhibitors (6); others (13) (some nueroprotective); neuroprotective strategies (6); and Complementary/alternative (6). I did not include the old school ABCR DMTs. I put in other information (how it works, mode, safety, efficacy) as I found it in different sites. I would love for those more knowledgeable than I to take a look - I have it on a spreadsheet, but not sure how to get it out!