July 13, 2017 Columns by Laura Kolaczkowski Ocrevus and Me, Part 2: Infusion Time and Side Effects Editor’s note: This column is second in a series. Read the first part here. Just you wait! How many times have we heard those words or said them to someone else? I find that now itās my turn to wait. What Iām waiting for is six months…
July 13, 2017 Columns by Tamara Sellman The Joys and Challenges of Summer I live in the best place in the U.S. during the summer ā the Pacific Northwest, with its temperate climate and easy access to nature and culture. Rarely do we experience heatwaves, and humidity levels run lower than in most places. We may joke thatĀ “it rains…
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.
July 11, 2017 Columns by Patricia Silva, PhD Disability Resources, Activism Need to Focus on Accessible Housing My disability rights activism includes housing issues. Affordable housing gets a lot of attention (no solutions, but attention, at least). Accessible housing, not so much. Like the invisible symptomsĀ of multiple sclerosis, the need for affordable ACCESSIBLE housing remains hidden. Accessibility needs to be part of the dialogue I…
July 11, 2017 Columns by Teresa Wright-Johnson An Unlimited Mind Must Recognize Physical Limitations It has been a busy few weeks. Well, when I think about it, every week is busy. There is always something that must be done. Just when I think things will slow down, my schedule lengthens. Admittedly, I am not a technology expert, so I rely on the…
July 11, 2017 Columns by Ed Tobias The Ogo: A 21st Century Mobility Scooter, but with a Hefty Price Tag About a year ago, I first learned about something called an Ogo. It was just in the development phase then, but it was the neatest thing I’d ever seen for getting around when your legs can’t do the job. You don’t need to use your arms, either.
July 10, 2017 Columns by Debi Wilson How to Improve MS-Related Imbalance One of the earliest symptoms that appeared before my multiple sclerosis (MS) diagnosis was imbalance. I remember turning my head to look at something and feeling slightly off-balance. I didn’t think much of it at the time, but that wobbly sensation gradually increased through the years. Occasionally, I…
July 10, 2017 Columns by Ed Tobias MS News That Caught My Eye: Young Patients Quit DMDs, Antioxidant to Slow Brain Decline, Interview with Top Ocrevus Doc, and Why Don’t I Smell That? In case you missedĀ them, here are some news stories that appeared in MS News Today that caught my eye over the past week. Younger MS Patients Who Are Hospitalized May Be at Higher Risk of Quitting Treatment, Study Reports Why would young patients, whose MS is…
July 7, 2017 Columns by John Connor MS Pipe Dreams: Dealing with Urinary Tract Infections I’ve been considering writing about the fun, fun world of catheters. As this column is morphing into some sort of diary, let’s deal with this week’s medical procedural drama. Welcome to UTI (urinary tract infection) week. Anyone who uses a catheter is prone to a higher incidence of…
July 7, 2017 Columns by Ed Tobias Researchers Working on a Band-Aid to Replace Shots How cool is this? Though it's not yet related to multiple sclerosis, researchers are developing a Band-Aid-size patch that can inoculate someone with the flu vaccine. The patch is made up of 100 solid, water-soluble microneedles that are just long enough to penetrate the skin. Theyāre contained in an area about the size of a dime. Adhesive helps the patch grip the skin during the administration of the vaccine, which is encapsulated in the needles and is released in about 20 minutes, as the needle tips dissolve. The patch is then peeled away and discarded like a used bandage strip. The researchers, working at Georgia Tech and Emory University, report that in their Phase I clinical trial the patch was just as effective in generating immunity against the flu as the traditional flu shot. They believe the microneedle patch can save money because it is easily self-administered, it can be transported and stored without refrigeration, and itās easy to dispose of without needing a sharps waste container. Above all, says principal investigator Nadine Rouphael, MD, of the Emory University School of Medicine, āhaving the option of a flu vaccine that can be easily and painlessly self-administered could increase coverage and protection by this important vaccine.ā Now, I donāt want to jump the gun. Although the researchers are working to develop these microneedle patches for use with other vaccines, including measles, rubella and polio, theyāve only completed the first phase of their clinical trials. Theyāre now planning a Phase 2 trial with more participants. Whether MS drugs might, someday, be administered this way is anyoneās guess. But, it certainly would be nice if one day, instead of jabbing yourself in the thigh for your scheduled MS shot, you could deliver your MS medication by just putting a Band-Aid on your skin.
July 6, 2017 Columns by Laura Kolaczkowski Ocrevus and Me Iāve done it! I made the treatment switch that so many people with multiple sclerosis are talking about: I said goodbye to Tysabri (natalizumab) and am now on Ocrevus (ocrelizumab) as my disease-modifying therapy (DMT). I went through 56 monthly infusions (or maybe more, I’ve…
July 5, 2017 Columns by Debi Wilson Another MS Symptom: Sciatic Nerve Pain at a Whole New Level Just when I thought I had experienced every multiple sclerosis (MS) symptom possible, another one emerges:Ā sciatic nerve pain. It can happen to anyone, but it is also associated with MS. A couple of months ago, I woke up with a sharp knife-type pain on the upperĀ back side…
June 30, 2017 Columns by Jamie Hughes Go, Go Avocado! I donāt normally go in for trends. For example, I donāt own a single pair of skinny jeans. Iāve never tried a Unicorn Frappuccino. Iām not on Instagram or Snapchat. I didnāt participate in the Ice Bucket Challenge. And I refuse to use the words ādoggo,ā āpupper,ā…
June 30, 2017 Columns by John Connor I’m an Only-Can-Do-One-Thing-a-Day Sort of Person So, I recently signed up to join a new and much closer exercise class. The previous drive of nearly an hour each way had proved to be beyond my range. Actually doing exercise when I got there seemed bonkers! But I haven’t been there as of yet ā my…
June 30, 2017 Columns by Ed Tobias My Lemtrada Journey: A 6āMonth Report It’s been a little over six months since I completed Round 1 of my Lemtrada infusions, so it’s time again to ask myself, “How am I doing?” The answer: I’m not sure. For many years, my brain MRI has remained unchanged. I can’t remember the last time…
June 29, 2017 Columns by Tamara Sellman The MS Alphabet: Foot Drop, Flexion, Fingolimod, and More ‘F’ Terms (Editorās note: Tamara Sellman continues her occasional series on the MS alphabet with this first of two columns about terms starting with the letter āF.ā) When it comes to multiple sclerosis, mastering an understanding of the disease means you need to mind your Ps and…
June 28, 2017 Columns by Cathy Chester 4 Ways to Care for Yourself While Caring for Others How can you care for your MS when a loved one is ill? You want to be able to care for others despite your own daily struggles. As unpredictable as MS is, what is predictable is that your life will be touched by the…
June 28, 2017 Columns by Judy Lynn Can You Cultivate Happiness as a Habit? Last week, I shared details ofĀ Everyday Matters,Ā a program by the National Multiple Sclerosis Society. This self-directed, multi-week program uses the principles of positive psychology. The readings, lessons, and exercises need not be completed in a particular order, but I am going to start my exploration of…
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 27, 2017 Columns by Teresa Wright-Johnson MS, Religion, and Spirituality: Why I Believe In God Religion and spirituality are personal, delicate issues for many. Various schools of thought exist, and I havenāt the desire or the ability to deem one more important than the other. Writing about religious and spiritual matters is at times taboo in an often secular world. I can, however,…
June 27, 2017 Columns by Ed Tobias If My MRI Is Stable, Why Is My Walking Getting Worse? During a routine exam with my neurologist recently, I asked her a question I’d never thought to ask before: “Why do you order regular MRIs of my brain, but not of my spine?” Interestingly, within a few days of my exam, a Harvard Med School study was…
June 26, 2017 Columns by Ed Tobias MS News That Caught My Eye This Week: Brain Scans, Spasticity, Tecfidera Study and Cigarettes In case you missedĀ them, here are some news stories that appeared in MS News Today that caught my eye over the past week. **** Harvard Study Finds No Link Between Clinical Exams and MRIs in Some MS Patients I’m really not surprised…
June 23, 2017 Columns by John Connor So Tired of This It’s summer in the U.K., and it’s hot. That’s cause for celebration for everyone but us. It’s actually the hottest June day since 1986. Heat immediately spikes my fatigue. For some of us, the cold does the same. Thankfully, not me ā I get the winter off. According…
June 23, 2017 Columns by Ed Tobias Ocrevus, Hope, and a Suicide Postponed Several months ago, I wrote a column about Andrew Barclay. Barclay died in an assisted suicide in December. He’d had multiple sclerosis for many years. Colin Campbell is a 56-year-old MS patient who lives in Inverness, Scotland. He also wanted to die. In fact, he was scheduled…
June 22, 2017 Columns by Tamara Sellman MS Alphabet: EAE, Endothelium, EpsteināBarr, and other ‘E’ Words (Editorās note: Tamara Sellman continues her occasional series on the MS alphabet with this second of two parts on terms starting with the letter āE.ā Read the first part here.) When it comes to multiple sclerosis, mastering an understanding of the disease means you…
June 21, 2017 Columns by Judy Lynn Everyday Matters: A Positive Program for People with MS Many years ago, not long after my MS diagnosis, my cousin gave me a āgratitude journal.ā At that time, I was all too aware of what I was not grateful for. The thought of giving thanks was daunting. But the journal suggested writing down just three things a…
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 20, 2017 Columns by Patricia Silva, PhD MS and Catheterization, Part 2: Outside the Hospital Catheterization training in the hospital did not prepare me for how to manage on a daily basis. In my last column, I described how I ended up in the hospital unable to urinate at all. In this column, I will cover more details about what I learned along…
June 20, 2017 Columns by Ed Tobias Hyping MS Headlines Is Uncool Once again, over the past couple of weeks, we’ve been blasted with headlines trumpeting a new MS discovery. Last month there were headlines about an inexpensive acne drug that supposedly could be used to reduce the symptoms of early MS. This month it’s headlines about a “cure”…
June 19, 2017 Columns by Debi Wilson My MS Speech Issues, and Why I Want to Head Off Any Swallowing Problems Many of the symptoms of multiple sclerosis feel random, and can be down right terrifying. I’ve recently been suffering from a scary MS symptom: slurred speech, also known as dysarthria. I open my mouth expecting the words I have chosen to appear. Instead, I slur and stutter…