March 14, 2024 Columns by Benjamin Hofmeister When you have multiple sclerosis, let assistive devices assist you Aside from a few unpleasant moments, I enjoyed my time as a medic in the U.S. military ā so much so that when I began to slow down noticeably, I decided to continue in that field by applying to become a physician assistant (PA). I initially wanted to…
May 27, 2022 Columns by John Connor How I Get Through My Days ā More Importantly, Please Tell Me How You Get Through Yours Todayās youth have to accumulate a range of skills. Everything changes so fast. Parents often have no idea what career their kids even want to follow. Do you know what a UX designer is? Me, neither. This latest social change was revealed to me in a recent Guardian article,…
May 13, 2022 Columns by John Connor No Crisis, No Column? OK, Fine: Everything Takes So Long With MS This weekās been a relief. I havenāt had to dash to casualty or fallen over in my chair. Nor have I stirred up a ruckus with the health powers that be or bumped into a fellow MSer with an interesting tale. My knockabout personality undoubtedly has…
January 19, 2022 Columns by Beth Ullah Recovering the Parts That MS Stole From Me āWho in the world am I? Ah, that is the great puzzle.ā ā “Aliceās Adventures in Wonderland,” by Lewis Carrol Jan. 9 was my 31st birthday. I remember looking outside, watching the low January sun glisten on the frosty ground as its orange haze thawed the earth. I liken this…
January 14, 2022 Columns by John Connor This Week, MS Takes a Back Seat The vagaries of multiple sclerosis are always present, but this week, my waking hours have been consumed by something far more important. I say waking hours, but we have to discount much of that time, because I’m put to bed at the early hour of 10 p.m. and spend several…
October 29, 2021 Columns by Jamie Hughes No Wasted Moments A friend of mine recently recommended a book to me by the multitalented Brian Doyle called āOne Long River of Song.ā Doyle, a devout Catholic (though I donāt think you need to be a Christian to appreciate his writing), was an award-winning essayist, poet, and novelist with more than…
October 8, 2021 Columns by John Connor Itās Just One of Those MS ‘Snow Days’ “Rage, rage against the dying of the light,” Dylan Thomas wrote in his famous poem about us humans fighting, against all odds, the inevitable moment of death. Oh, yes, I went there. I’m starting with the dark and seeing if I can pull it back with a swath of…
September 3, 2021 Columns by Jamie Hughes Just Put One Foot in Front of the Other Iāve been working on my health this last year or so, trying everything from a vegetarian diet to visiting an acupuncturist to help with muscle tension and headaches. All of it has been just wonderful. But the elephant in the room ā the thing I still needed to…
August 14, 2020 Columns by John Connor Relapse, Relapse, Relapse, Profanity, Relapse Maybe I should have called this one “Short and Sharp 2.” Yes, I’ve had another relapse, following my last one in May. I can no longer clean my own tail, and the present regime is literally to “s**t the bed!” I’m using a lot of exclamation points here,…
July 17, 2020 Columns by Jamie Hughes What Will We Do? I recently started writer David Sedarisā MasterClass, and one piece of advice he keeps reiterating is the importance of keeping a diary, a daily record of your doings and dealings in this world. Itās a habit Iāve fallen out of, so I bought a stack of Moleskine cahier journals…
February 7, 2020 Columns by John Connor This Story Has Legs ā One Leg, At Least! This is the story of how I became a patient columnist. Three years ago, I was still walking. Shambling, anyway. I could get up and down stairs but had to rest before reaching my ordinary car with fitted hand controls. To go somewhere on my own, I needed someone to…
August 3, 2018 Columns by John Connor Downbeat, but Upbeat Most weeks with MS are downbeat. That’s hardly a way to capture a reader’s attention ā all of us struggle. What we need is light to blow away the shade. Last night as I climbed the stairs to bed, my legs gave out with three stairs to go. Luckily,…
May 18, 2018 Columns by John Connor Chained to My Desk The tinkling laughter of tiny children filters through the windows of my bedroom. It’s a sunny Sunday afternoon. In years past, I would be sitting in the garden watching my grandnieces play. Undoubtedly with a large jug of Pimm’s that I would have concocted for the assembled adults. We’re…
April 25, 2018 Columns by Mike Knight Marking the 1-year Anniversary of ‘MS In Motion’ April is my month. The weather gets warmer, the world gets greener, and everything just generally lightens up. I was born in April. My wife and I were married in April. My favorite holiday is April Foolsā Day. I love…
February 21, 2018 Columns by Judy Lynn ‘Something On Our Minds’: A Book by and for Those with MS Frigid winter weather keeping you indoors? Laid up with the flu? If youāre looking for something to do while you power through this cold slog of February, allow me to recommend a cup of tea and a good book. The particular book that I would like to suggest…
August 1, 2017 Columns by Teresa Wright-Johnson Use the Power of Writing to Lift Yourself, Others The art of writing has been my refuge during some incredibly difficult times. Writing also serves as a vessel to express my joys, life lessons, and messages I wish to share with others. Writing is therapeutic. Expressing myself through prose and poetry allows me to connect with others. It…
July 12, 2017 Columns by Mike Knight Write On: Let Your Voice Do the Typing with Voice-to-Text Technology āO-cree-VUS,ā 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). āOkra busā 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 ā so big that even my friends and family were aware of the announcement. Naturally, I wanted to write about it. I tried again. āOh-CREV-us,ā I repeated. Clearly, yet naturally. I use Dragon for Mac speech-recognition software to write \. āClearly and naturallyā is part of the softwareās mantra. āO Christmas.ā āOhhhh-creeee-VUUUS,ā I said. Very. Clearly. Very. Naturally. āOkra vest.ā The weakness in my right foot that led to foot drop began in the early 2000s. The weakness in my right hand didnāt present itself until late 2015. At first, I tried using Appleās 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 ā¦ most of the time. Scribe seemed clunky, and the lag time between saying a word and Microsoft Word recognizing it and ātypingā 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. Iāve written for so long that writing and typing and my fingers were woven together, a symbiotic relationship that I couldnāt fathom ending. Yet, it became clear that this was going to be a new hurdle (foolishly, one I hadnāt anticipated) and would require a different way of thinking about writing, of what I ādoā 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 didnāt want to read the instructions for using Dragon. And I didnāt want to practice. I just wanted it to work, and I just wanted to be the āmeā 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 ā hands-free ā 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 Iād write a review of the product, which youāll find here. The short story is that Dragon is a dictation ārobot.ā 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 usersā voices, and within reason, can get the job done even for longer, more complex composition. It even offers a ācustom word bankā in which users may add frequently used words, like Ocrevus or ocrelizumab. But I hadnāt made the effort. āOh-KRA-liz-ooh-MABā I said, switching it up and hoping Dragon would finally recognize the word. āOak Grove Missoula lab.ā My deadline was looming and I could hear the clock ticking. Clearly and naturally, I screamed āOCREVUS!ā into the headset. āOh crap this.ā At that moment I realized how valuable the software was and is. No, it didnāt 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. āOh crap this indeed,ā I thought, smiling. And then Dragon and I finished my column.
February 17, 2017 Columns by Jamie Hughes Conference Was a Reminder of Why We Must Continue to Create Own Stories Last week, I attended the Association of Writers & Writing Programs (AWP) conference in Washington, D.C. I had the opportunity to meet many fine folks who are hard at work creating everything from alphabet books for children to poetry protesting xenophobia. I attended panels on editing, writing…