January 30, 2019 Columns by Mike Knight Ā My Progressive MS Moment of Truth āIf I were you two, I think Iād plan for the worst,ā 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…
December 19, 2018 Columns by Mike Knight My Year-end MS Zen Not long ago, I dreamed I was running. Again. It was the first time Iād had the dream in a while. It was always the same, āBeen Caught Stealing,ā or something like it roaring in my headphones, me in stride and rhythm with the…
November 14, 2018 Columns by Mike Knight Rock Bottom: When Sitting Down Is a Pain in the Butt āThe reason you canāt keep your shorts up,ā the orthopedist said, āis because you donāt have enough butt anymore.ā It was my first visit with this doctor, and I wasnāt quite sure what to expect. While waiting in a small, wood-paneled anteroom next…
October 10, 2018 Columns by Mike Knight Pill Stopper: Why Iām Off My Meds I’m not taking all the medication I’ve been prescribed. Chances are, youāre not either. Medication nonadherence,Ā or not taking medicine as prescribed, is a thing ā a big thing. According to a columnĀ in The New York Times,…
September 12, 2018 Columns by Mike Knight Out on a Stim: My FES Journey Comes to an End (Part 3) Third in a series. Read parts one and two. In March 2018, I began a personal research project ā quest if you will ā to assess how functional electrical stimulation (FES) devices might help me deal with the foot drop in my…
August 8, 2018 Columns by Mike Knight A Good MS Problem to Have: What to Do When I Feel Great? I knew it was going to be one of those days as soon as I opened my eyes. I woke in some sort of half-start, my eyelids popping abruptly open as I looked up at the ceiling. Something seemed…
July 11, 2018 Columns by Mike Knight Out on a Stim: The Pros and Cons of FES Devices (Part 2) Second in a series. Read part one. The thing about functional electronic stimulation (FES) devices, at least to me, is waiting for them to engage. No matter how much I prepare myself, Iām still surprised ā on pins and needles, if you will ā…
May 23, 2018 Columns by Mike Knight Out on a Stim: The Pros and Cons of FES Devices (Part 1) First in a series. For a minute or two, I felt like I was in a time machine. It was late March, and I was test driving (perhaps test walking) the WalkAide System, a functional electronic stimulation (FES) device designed, according…
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…
April 11, 2018 Columns by Mike Knight ‘OT’ in the House: Occupational Therapy Is Improving My MS Home Life It is noon on Wednesday, and I am sitting in a chair in our living room. My wife holds two books against my hips, one on either side, while Stefani, my occupational therapist, measures the width ā measuring me for a wheelchair. Like a lot…
March 28, 2018 Columns by Mike Knight Brace Yourself: My Ups and Downs with AFOs It was late May 2014, and my wife and I were on our first trip to the Cleveland Clinic. Weād been to Cleveland for a wedding a few years earlierĀ but had been too busy to explore. We booked a room at the…
March 14, 2018 Columns by Mike Knight Effortless: How Occupational Therapy Is Making Life with MS Easier āToday weāre going to talk about the Four Ps,ā Stephanie says. āYou’ve probably heard of these already, but letās go through them anyway.ā I look at her the way a dog tilts its head when it hears a high-pitched whistle.Ā Like…
February 14, 2018 Columns by Mike Knight The MS Balancing Act: Steady As We Go Gait and balance issues and MS go together like peanut butter and chocolate.Ā At least they do to me. In one way or another, theyāve been in the foreground of my life since I was diagnosed in 2013.
January 31, 2018 Columns by Mike Knight 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…
January 17, 2018 Columns by Mike Knight Stair Master: My Hip Flexors Donāt Lie! What Iām about to write will sound like I am tooting my own horn. Iām not. Really. But something is working for me in my battle to navigate the stairs in our house, something that might help others…
January 3, 2018 Columns by Mike Knight Turning Corners with MS: Ocrevus, Biotin, and 2018 Like a lot of people with MS, I took part in the āGreat Ocrevus Rush of 2017,ā with the fanfare surrounding the release of the first therapy in the United States known to have some ability to stem the advancement of primary and secondary progressive MS.
December 13, 2017 Columns by Mike Knight Arrested Development: A Moving Tribute to Physical Therapy I am on āhouse arrest.ā Sort of. Let me explain. Earlier this year, I wrote Large and In Charge: Building a Better MS Care Team, a column about my frustration with my āMS…
November 29, 2017 Columns by Mike Knight Dis-labeled: How I Got Right with Being Disabled Though I donāt always use it, I take my cane with me every time we go shopping. I can still shuffle to the cart pickup and drop-off without it and the cart doubles as my walker. Canes can be clunky, arenāt easily stored, and I simply…
November 15, 2017 Columns by Mike Knight 3 Tips for Explaining MS to Others Face it: Understanding MS isnāt easy ā even if you have it. Thereās 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…
November 1, 2017 Columns by Mike Knight 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. Iāll be painfully honest here: We are both woefully unskilled at using…
October 18, 2017 Columns by Mike Knight Cue Me In I have every single malady associated with MS. Iām absolutely positive. Because whenever I find out about a new one, or a new study that says we donāt sleep well, or we twitch or tremble, or suffer from this deficiency or that, Iāve got it.
September 20, 2017 Columns by Mike Knight Data Differences: Better Records, Better Care āIām sorry, these files take forever to copy,ā 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. āI know it can be a…
September 6, 2017 Columns by Mike Knight Large and In Charge: Building a Better MS Care Team āWhat else is going on?ā Matt, our family doctor of more than 15 years, asked. It was at the end of a mid-August appointment, one Iād made due to pain in my right shoulder, elbow, and hand. I wasnāt sure if it was related to MS…
August 23, 2017 Columns by Mike Knight 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…
August 9, 2017 Columns by Mike Knight Paying Caregiver’s Dues: Giving as Good as I Get The plastic mustard bottle hurtles toward the kitchen floor. Like a statue I stand, mouth agape, as it somersaults in slow-motion through space. Only seconds before, Iād removed the top of the bottle to scrape one final dollop from it onto the sandwich…
July 26, 2017 Columns by Mike Knight Dialing for MS Dollars: Fighting ‘Repeal and Replace’ One Call at a Time I have written multiple iterations of this column trying to keep pace with the disastrous healthcare bills being presented first in the U.S. House of Representatives and now the Senate. But I canāt keep up with them. There are just too many and…
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.
June 28, 2017 Columns by Mike Knight Pardon the Introduction: My Life with MS in Motion Though my first brush with MS cameĀ in 2000 or so,Ā I wasn’tĀ diagnosed untilĀ 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…
June 21, 2017 Columns by Mike Knight How Pilates Changed My Life ā¦ and My MS, Part Four, Addendum: Home Gym For $100 Earlier this year, I visited a physical therapist Iād seen way back in my running days to devise a home workout routine that could help me address not only foot drop-related issues, but also a routine Iād actually do. One of the challenges I have with PT is doing…
June 14, 2017 Columns by Mike Knight How Pilates Changed My Life ā¦ and My MS, Part Three: Mariska Brelandās Pilates Tips Note to readers: This is the last of a three-part series focusing on the valuable role Pilates has played in my life with MS. If you missed the first two, youāll find them here and here. This column focuses on…