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 25, 2017 Columns by Teresa Wright-Johnson Like A Skyscraper: Tall, Strong and Monumental My columnĀ last week focused on the difficulties of managing the emotions that accompany MS. I sincerely thank you for your responses, stories and words of encouragement. Again, the one thing that was apparent is that most of us fight this battle. We are left to sit with…
July 25, 2017 Columns by Ed Tobias How Do You Answer ‘Are You Doing OK?’ When Asked About Your MS? “Are you doing ok?” It’s one of those questions we all get. And it’s one that most of us don’t like to answer. How do you respond when someone asks you that question? #1 You can say “Yes, I’m fine, thanks,” even if you’re not OK, and be…
July 24, 2017 Columns by Debi Wilson How MS Helped Me Embrace Living in the Present My multiple sclerosis (MS) brings fatigue, pain, and instability into my life, but surprisingly, it also makes me more aware of my life and surroundings. For me, that means being more aware in the present moment and focusing on the good in my life right now. Living in…
July 24, 2017 Columns by Ed Tobias MS News That Caught My Eye This Week: Ocrevus and Insurance, Intimacy Issues, Breastfeeding In case you missedĀ them, here are some news stories that appeared in MS News Today that caught my eye over the past week: Ocrevus Is Popular Among Neurologists, but Insurance Is a Growing Concern, Report Concludes Some great marketing and PR efforts gave Ocrevus a…
July 21, 2017 Columns by John Connor The Mouth that Roared After 10-odd ā indeed, increasingly odd ā years, I presumed I’d become something of a gnarled hand at MS. If you read about something on practically a daily basis, you begin to think you’ve got pretty comprehensive knowledge of a subject. Sure, in the past, events happened that I…
July 21, 2017 Columns by Ed Tobias Do MS Patients in the UK Get the Right Treatment Quickly Enough? About two years ago, a report by the European Multiple Sclerosis Platform stated that only 21% of MS patients in the United Kingdom were receiving any kind of disease-modifying therapy. This is compared to 40% in France and 69% in Germany. Now, the U.K. branch of pharmaceutical giant Sanofi has published a report of its own, "The Missing Pieces." The report tries to answer, "Why is this so?" Here are some of the answers that were received online from a small group of healthcare professionals and MS patients: Nearly three-quarters of U.K. healthcare professionals think that people with MS face delays in starting on disease-modifying treatments (DMTs). Nearly one-quarter of MS patients there reported being unaware of some treatments that could help delay the onset of disability. Only half of people with MS say disability was discussed with their healthcare professional when they were first diagnosed, yet 69% of the healthcare professionals say it was discussed. Only a third of those patients say that "disability" is discussed in their regular MS appointments. Two-thirds of people with MS say that maintaining independence is their main treatment goal, followed by reducing relapses. The report also says that healthcare professionals believe the primary reason that DMTs are slow to be prescribed is lack of access in the U.K. to neurologists who specialize in MS. And, it says, 62% of MS specialist nurses and 47% of MS specialists thought this delay is also because of a shortage of healthcare facilities needed to deliver DMTs. Now, it needs to be noted that this survey involved only 100 MS specialist healthcare professionals and 120 MS patients in the U.K. And, as mentioned earlier, the survey was conducted by Sanofi, which claims to be the fourth largest pharmaceutical company in the world. Sanofi makes two big-time MS drugs: Aubagio (teriflunomide) and Lemtrada (alemtuzumab). Naturally, it has a vested interest in seeing that MS patients are treated with DMTs. (Full disclosure: I recently was compensated by Sanofi Genzyme to attend a meeting of "digital influencers" that the company held at its U.S. headquarters.) But drug sales aside, a case certainly can be made for treating MS patients with DMTs quickly after patients are diagnosed, and many drugs currently on the market have shown that they are able to modify the course of MS. And there's a case to be made about a need for better patient-healthcare provider communication. So, my question is: How do MS patients in the U.K. feel about access to DMTs? And to MS care, in general? Is this small report correct about the lack of knowledge by patients about their treatment options? Is it correct about the lack of MS specialists and resources in the U.K.? Do MS patients outside of the U.K. have similar concerns?
July 20, 2017 Columns by Jennifer (Jenn) Powell Silver Linings A silver lining is the hopeful side of a situation that might seem gloomy on the surface. A metaphor for optimism, this accurately describes who I am. This is not to say that I donāt experience the inevitable darkness that accompanies those trying days living with progressive multiple sclerosis, I…
July 20, 2017 Columns by Tamara Sellman The MS Alphabet: Gait, Gag Reflex, Gadolinium and Other ‘G’ 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 āG.ā) When it comes to multiple sclerosis, mastering an understanding of the disease means you need to…
July 19, 2017 Columns by Judy Lynn Find Your Strength and Adjust Your Mindset The second module in the National Multiple Sclerosis Society’s positive psychology program,Ā “Everyday Matters,”Ā is called “Adjusting Our Mindset,” or āthe fulcrum and the lever.ā In science, the law of the lever states that power into the lever equals the power out, and the ratio of output to…
July 18, 2017 Columns by Teresa Wright-Johnson The Emotional Roller Coaster of Managing Emotions with MS I am an emotional, sensitive woman. I like to believe that I have a warm heart in a very cold world. Isnāt this what the world needs? Love, warmth, acceptance and transparency? Recently I find that my emotions change within a millisecond. So, instead of being sensitive, I…
July 18, 2017 Columns by Ed Tobias Fighting in Court Over MS Generics Biogen is a big pharmaceutical company that produces a half-dozen MS drugs. Among them are Tysabri, Avonex and Tecfidera. And Biogen is doing all it can to protect its turf, particularly when it comes to its best seller,Ā Tecfidera. Last month the company filed lawsuits against several…
July 17, 2017 Columns by Debi Wilson Seeing First-hand the Effect of Vision Issues Linked to MS I was watching my son’s baseball game in the early 1990s when suddenly, my left eye went blurry and blocked my vision. It was a startling incident that lasted about two hours, and then it was gone. That was my introduction into the unpredictable world of multiple sclerosis…
July 17, 2017 Columns by Ed Tobias MS News That Caught My Eye This Week: Stem Cell Cautions, Myelin Mystery, Amprya Study and Zinbryta in the EU In case you missedĀ them, here are some news stories that appeared in MS News Today that caught my eye over the past week. Experts Call for Tighter Regulation of Stem Cell Therapies in Use at Clinics Worldwide I read a lot of comments on various social…
July 14, 2017 Columns by Jamie Hughes Whatās Your Strength? I have a co-worker who can meet someone and 10 minutes later know their life’s story. Heck, she even bonded with a woman who rear-ended her in traffic the other day. I admire this skill and strive to cultivate it in my own life, but it certainly doesnāt…
July 14, 2017 Columns by John Connor Advantage Me: Now Serving, Wimbledon’s Centre Court It's Wimbledon fortnight. The tennis signifies it's the height of the British summer. You usually can tell it's an English summer because it rains for two weeks. Not this time. It's baking hot and the hallowed grass can't handle it! If U.S. President Donald Trump is right and there is no such thing as climate change, the least he could do is supply the All England Tennis and Croquet Club with the formula for his resilient head of hair. Everything thrown at him does seem to just bounce off. It would make the perfect surface for these changing times. And what has this to do with MS? Well, it seems I've turned into Maria Sharapova. And, no, it has nothing to do with drugs or a penchant for wearing ultra short skirts! John Connor & Sean Meo having a smashing time. A friend was over who hadn't seen me in my natural habitat, i.e., at home, for a long while. "Is all that noise normal?" she asked my wife, "Is John in any trouble?" "No," my wife tersely explained, "That's what he's like these days!" I've found that heaving my lumpen carcass around is aided by a cacophony of grunts and groans. I can hear that it's not pleasant, but it is completely involuntary. I could move without making noise, but the sheer concentration needed would take mental resources away from maintaining balance. All pride goes before falling over! I live just a few miles from Wimbledon, but the only advantage this usually gives me is the knowledge if it's raining here, it's about to rain there. As a tennis nut, I can then get on with something else rather than watch it on TV. Getting tickets, unless you're willing to camp out in a queue for days, is nigh impossible. That is, it was, until I entered the wheelchair tennis fraternity. Somehow, I ended up on a database that puts me in a regular ballot for tickets. Don't get to go every year, but, hey, that's a lot better than not going at all! And last week, I was fortunate to get Centre Court tickets. If it had rained, unlike the other courts, it has a sliding roof, so the tennis rolls on unabated. Instead, it was a blistering day. Luckily, the wheelchair section is right at the top. The view is still excellent, but we were sheltered from the sun by the court's permanent roof. Previously, I've been on No. 1 Court, where the wheelchair area is superb. But I'd have been in direct sunlight. Five hours of that and I'd have wilted like a vampire. The added bonus at Centre Court was a disabled toilet only a few yards away and a concessions area nearby. We could get as many Pimm's cocktails as we wanted without queuing and missing game after game. The downside is that you are now fully aware of the exorbitant cost of the things: 8.50 pounds a go! We sipped, rather than guzzled, our way through the afternoon. My carer for the day was Sean Meo, a comic with whom I've worked for some 20 years. He is the most enthusiastic tennis fan I know. He also is a fitness fanatic and correctly has a low opinion of sugar. So, yes, I had to get my own ice cream! It was cheering to be physically close enough to get to the concessions area so that I could. The real bonus came at the beginning of the day. To get into Centre Court with a wheelchair, we had to go via the players entrance. The guard on the door said we had to wait five minutes because an "old lady" was coming down in the lift. It was Thursday of the first week; it couldn't be the Queen. We were only feet away from the "old lady" when she emerged, and she's aged well. It was Roger Federer.
July 14, 2017 Columns by Ed Tobias She Has MS, She Voted for Obamacare, and She’s Worried Donna Edwards has multiple sclerosis. Edwards is currently unemployed. But a year ago she had a well-paying job with excellent medical benefits. Edwards was a member of the U.S. House of Representatives. In fact, she represented the congressional district where I once lived. (Courtesy of former U.S.
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…