MS in Motion - a Column by Mike Knight

 My Progressive MS Moment of Truth

“If I were you two, I think I’d plan for the worst,” Amy, my physiatrist, said to my wife and me as we sat in the examination room. It was just after 11 a.m. on Friday, Jan. 18. January has become one of two pivotal months in terms of…

My Year-end MS Zen

Not long ago, I dreamed I was running. Again. It was the first time I’d had the dream in a while. It was always the same, “Been Caught Stealing,” or something like it roaring in my headphones, me in stride and rhythm with the…

Rock Bottom: When Sitting Down Is a Pain in the Butt

“The reason you can’t keep your shorts up,” the orthopedist said, “is because you don’t have enough butt anymore.” It was my first visit with this doctor, and I wasn’t quite sure what to expect. While waiting in a small, wood-paneled anteroom next…

Pill Stopper: Why I’m Off My Meds

I’m not taking all the medication I’ve been prescribed. Chances are, you’re not either. Medication nonadherence, or not taking medicine as prescribed, is a thing — a big thing. According to a column in The New York Times,…

Dazed and Confused: Tips for when Gravity Calls

Nothing resets your thinking like bouncing your head off a hardwood floor. At least, for me. It was about 10 p.m. on a Saturday night, and we were shutting down the house. That routine consists of turning lights off, locking doors, and plugging in phones and…

3 Tips for Explaining MS to Others

Face it: Understanding MS isn’t easy — even if you have it. There’s no known cause, no cure, no predictability in progression, and while there are common symptoms and manifestations, they affect everyone differently. Some symptoms come and go with no rhyme or reason and…

On the Other Hand: Leaning Left With MS

Some months ago my wife and I went out for dinner at our favorite sushi place. As is frequently the custom at sushi restaurants, the table setting included chopsticks. No forks. I’ll be painfully honest here: We are both woefully unskilled at using…

Cue Me In

I have every single malady associated with MS. I’m absolutely positive. Because whenever I find out about a new one, or a new study that says we don’t sleep well, or we twitch or tremble, or suffer from this deficiency or that, I’ve got it.

Data Differences: Better Records, Better Care

“I’m sorry, these files take forever to copy,” the woman at the registration desk says, breaking the silence that had settled between us while she uploaded MRI scans from the CD I gave her moments earlier. “I know it can be a…

Sole Survivor: My Life, One Step at a Time

Footwear and shoes and journeys have been in my info stream (and on my mind) a lot lately. First, I stumbled onto a very fine column about shoes and MS written by Jennifer Powell (Exchanging a Sole for a Soul). Her essay resonated…

Write On: Let Your Voice Do the Typing with Voice-to-Text Technology

“O-cree-VUS,” I said, clearly and naturally into the headset. I had recently purchased the device for use with the voice-to-text software I need to type (MS, right-hand weakness, loss of finger dexterity and motor skills). “Okra bus” slowly appeared on my computer screen. It was late March, and I was working on my first column for Multiple Sclerosis News Today. The Food and Drug Administration (FDA) had just approved Ocrevus (ocrelizumab) for use in the United States, making it the only drug to receive the agency's blessing for treating primary progressive multiple sclerosis. It was a big deal — so big that even my friends and family were aware of the announcement. Naturally, I wanted to write about it. I tried again. “Oh-CREV-us,” I repeated. Clearly, yet naturally. I use Dragon for Mac speech-recognition software to write \. “Clearly and naturally” is part of the software’s mantra. “O Christmas.” “Ohhhh-creeee-VUUUS,” I said. Very. Clearly. Very. Naturally. “Okra vest.” The weakness in my right foot that led to foot drop began in the early 2000s. The weakness in my right hand didn’t present itself until late 2015. At first, I tried using Apple’s Scribe feature, largely because it was already installed on the Mac I had purchased that year, and also because Mac and Apple products are easy to use and intuitive … most of the time. Scribe seemed clunky, and the lag time between saying a word and Microsoft Word recognizing it and “typing” it was significant. At one time, I had written 5,000-word feature stories, time-consuming projects that demanded long hours of composition, editing, typing, and writing. I’ve written for so long that writing and typing and my fingers were woven together, a symbiotic relationship that I couldn’t fathom ending. Yet, it became clear that this was going to be a new hurdle (foolishly, one I hadn’t anticipated) and would require a different way of thinking about writing, of what I “do” in life, and in that way, of who I was versus who I am. By spring of 2016, it was obvious that my typing days were coming to an end, and I began using Dragon for Mac. (Full transparency: The folks at Dragon provided a review copy for me to try for free.) But I didn’t want to read the instructions for using Dragon. And I didn’t want to practice. I just wanted it to work, and I just wanted to be the “me” I remembered. As long as I was only writing short emails and could live with sketchy grammar, it was awesome. Drunk from my regained capacity, I began writing and sending emails to everyone for everything. The sobering reality that came with writing anything of substance or craft — hands-free — was equally spectacular. Slowly, I came to understand that Dragon (and all such software and, frankly, all such assistance for better managing my MS and helping myself) was no better than the effort I put into making it work. The people at Dragon asked if I’d write a review of the product, which you’ll find here. The short story is that Dragon is a dictation “robot.” It can format, and cut and paste, and carry out so many of the functions that we take for granted, or at least, once did. With time, commitment, and effort, Dragon learns users’ voices, and within reason, can get the job done even for longer, more complex composition. It even offers a “custom word bank” in which users may add frequently used words, like Ocrevus or ocrelizumab. But I hadn’t made the effort. “Oh-KRA-liz-ooh-MAB” I said, switching it up and hoping Dragon would finally recognize the word. “Oak Grove Missoula lab.” My deadline was looming and I could hear the clock ticking. Clearly and naturally, I screamed “OCREVUS!” into the headset. “Oh crap this.” At that moment I realized how valuable the software was and is. No, it didn’t get the spelling correct, but it did help make that first column possible and it did help me hang on to something I still find very valuable. And, in its own way, Dragon seemed to understand not just the word but also the context. “Oh crap this indeed,” I thought, smiling. And then Dragon and I finished my column.

Pardon the Introduction: My Life with MS in Motion

Though my first brush with MS came in 2000 or so, I wasn’t diagnosed until December 2013 with primary progressive MS. Shortly after the diagnosis, I began scouring the internet for information about the disease and how to live with it. Sound familiar? I found…

Dancing Doodle

Did you know some of the news and columns on Multiple Sclerosis News Today are recorded and available for listening on SoundCloud? These flash briefings give our readers an alternative option for accessing information important for them.

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