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…
Mike Knight is a longtime freelance writer, journalist and marketing communications professional who has written for a variety of publications over the past 20+ years including dailies, weeklies, monthlies and inflight magazines and now, MS News Today and also his own site, mikeknightwrites.com. He lives in Indianapolis, Indiana with his wife of 31 years and two cats and a bicycle he refuses to quit riding. After nearly 20 years of disparate illnesses, he was diagnosed with a progressive form of Multiple Sclerosis in 2013.
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“If I were you two, I think I’d plan for the worst,” Amy, my physiatrist, said to my wife…
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“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.
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