May 24, 2019 Columns by John Connor Years of Laughter: It’s Been a Mammoth 40 Years Last Monday night, I was strangely in the audience at London’s Comedy Store. At a rough calculation, I have directed about 1,500 shows there, have been in the audience for maybe 20, and even have been on the stage a few times. One doesn’t count, as I was drunkenly…
April 26, 2019 Columns by John Connor Why I Decided to Join the A-Team (Millennials, Look It Up!) ā Part 1 First in a two-part series. Do I give in or fight? I’d had all the tests, and in the summer of 2009, my fears were confirmed: I had MS. My first question was, “Would I end up in a wheelchair?” My neurologist, who must have given the answer innumerable…
April 5, 2019 Columns by John Connor Going Mobile In February of last year, I stopped. Walking more than a few steps was suddenly impossible. I’d fought, taken every medication and supplement possible, but I’d lost. Maybe positive thinking and mindfulness would have helped, but for me, that was a step too far! Research, organization, and…
March 1, 2019 Columns by John Connor Hair We Go Again I can’t quite remember when I got hooked on the writings of Jack London, but I don’t think I’ve ever quite shaken off his Nietzschean-inspired “Superman” ethos. It comes in handy for surviving in the wilds of the winter in the Yukon and forcing yourself to build a…
February 19, 2019 News by Santiago Gisler Participants Sought for Clinical Trial Studying Effects of Lipoic Acid on Progressive MS A clinical trial to test the effects of antioxidant treatment with lipoic acid on progressive forms of multiple sclerosis (MS) is recruitingĀ 118 participants at seven sites in North America. The study sites include: Birmingham, Alabama; Burlington, Vermont; Ā Portland, Oregon; Salt Lake City, Utah; Seattle, Washington; Washington, D.C., and;…
January 9, 2019 News by Alice MelĆ£o, MSc Five Finalists Vie for $1 Million Prize in Mobility Unlimited Challenge Five finalists remain in the running for the $1 million prize being offered in the Mobility Unlimited Challenge, a global competitionĀ to promote the development of innovative solutions for personal mobility devices. A panel of expert judges selected the finalists from among 80 applications submitted by teams from 28 countries.
November 2, 2018 Columns by John Connor How I Managed to Get a Scary Halloween Haircut “You’ve had a haircut ā very smart!” was the greeting at work. Yes, but it was in no way a simple thing. The logistics involved were really that: It took the small army of my family to complete the mission. Until my last relapse six months ago, I could…
October 25, 2018 News by Joana Carvalho, PhD PRIMERS Framework Aims to Better Understand How Exercise Helps Movement and Cognition in MS Patients A new conceptual framework, called PRIMERS, has been proposed as a way of better understanding howĀ physical exerciseĀ works to improve cognition and mobility in people withĀ multiple sclerosis, and using what’s learned to create new types of rehabilitation therapy for MS patients. PRIMERS, conceived by a team led by researchersĀ the…
August 24, 2018 Columns by John Connor Everywhere I Go, I’m Invited To ‘Take a Seat’ I knew I had MS nine years ago when I went back to see my neurologist. I’d had the lumbar puncture to prove it definitively, and I displayed all the requisite symptoms. The only question I had was, “Will this lead to me being in a wheelchair?” The…
August 23, 2018 News by Catarina Silva MS Patients Speak of Importance of Exercise and Activity to Overall Sense of Well-Being in UK Study People with multiple sclerosis (MS) value exercise and physical activity far beyond the concept of “staying fit,” and consider exercise essential to maintaining a reasonable level of independence and being able to engage in social activities, a small U.K. study based on interviews reports.Ā The study, ā…
May 25, 2018 News by Alice MelĆ£o, MSc Limited Use of Large Muscles Affects Health of Nerve Cell-producing Stem Cells in Brain, Mouse Study Finds Lesser time spentĀ exercising and using large muscles can result in serious alterations in the metabolism of brain stem cells and their ability to generate new nerve cells, a study suggests. These findings can help to explain why patients with neurological disorders, such as multiple sclerosis andĀ spinal muscular atrophy,…
March 20, 2018 News by Jose Marques Lopes, PhD Treatment with Umbilical Cord Stem Cells Safe with Sustained Benefits for MS, Trial Shows Treatment with umbilical cord stem cells was found to be safe and leads toĀ sustained improvements in disability and brain lesions of multiple sclerosis (MS) patients, according to a clinical trial. The study, āClinical feasibility of umbilical cord tissue-derived mesenchymal stem cells in the treatment of multiple sclerosis,ā was…
March 16, 2018 Columns by John Connor Into the Woods Well, I’m usually fairly upbeat, but this time, it’s going to be beyond me. We’ve all had relapses ā I think I’m in the fitting clichĆ© of being on my last legs. I can, on a good day, transfer on my own from the bed to my trusty…
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…
December 1, 2017 Columns by Ed Tobias A Wheelchair that Drives Itself I never thought I’d find a subject for this MS column in the technology magazine Wired. But, what do you know? A recent article suggested that the same technology being used to create self-driving cars could (and should) be used to create self-driving wheelchairs. Artist and…
November 17, 2017 Columns by Ed Tobias Airport Tips for Holiday Flyers Thanksgiving is just a few days away, so I thought it would be a good time to repeat a few of my airline travel tips and add a few new ones. Get the wait-time app Needless to say, you need to get to the airport early on busy travel…
October 6, 2017 Columns by John Connor I Don’t Know What It’s Called, But I Like It It looks like a dog’s leash, but it isn’t. I put in “dog’s lead” and “disabled apparatus” into my first Google search and fittingly was taken down into a rabbit’s warren of equipment for psychically challenged dogs. Who knew? It’s a nifty bit of kit for moving your leg…
September 15, 2017 Columns by Ed Tobias My Lemtrada Journey: At 9 Months, a Cane Tells a Tale Back in May, when I updated everyone about my Lemtrada treatment at six months post-infusion, I began with a question my wife asked: “Do you think you’re walking better?” And, I thought IĀ was. Maybe. Just a little. I was walking a bit more smoothly, my left foot…
September 8, 2017 Columns by John Connor Disjointed: Living the New Netflix Sitcom I was going to write about something else this week and then … I got STONED! Those aren’t words I thought I’d ever write. I’d been a kid during the 1960s, but later on had duly done my literary homage by mainlining Jack Kerouac (yes, I know that…
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 7, 2017 News by Patricia Silva, PhD New Ocrevus Findings Show Benefits to Range of MS Patients: Interview with Genentech’s Dr. Hideki Garren Genentech shared new insights into the workings of Ocrevus (ocrelizumab) and its effectiveness in reducing disease activity and slowing progression in relapsing and primary progressive multiple sclerosis (MS) at the recent 3rd Congress of the European Academy of Neurology (EAN). The new findings, previously reported here, built on analyses of information gathered during the three Phase 3 clinical trials assessing Ocrevus' safety and efficacy, as well as through monitoring patients in extension studies. The studies showed that nearly 40 percent of Ocrevus-treated relapsing patients and nearly 30 percent of primary progressive patients achieved NEPAD during the Phase 3 trials. In contrast, only 21.5 percent of those treated with Rebif and 9.4 percent receiving placebo achieved NEPAD ā figures that demonstrate Ocrevusā impact on patientsā lives, as well as Ocrevusā ability to slow the decline in walking ability and other types of disabilities are comparable between patients with relapsing and primary progressive disease ā data that demonstrate that the treatment acts on disease mechanisms that drive disability in both disease forms. How these effects play out in the long-term is the subject of ongoing research, as Genentech continues to follow these patients in an extension study. In addition, Ocrevus' prescription label strongly advises against pregnancy while on the treatment. Despite precautions, some women became pregnant during the trials. One of the meeting presentations narrated outcomes of these pregnancies; one healthy baby born at term and two ongoing pregnancies in women exposed to the drug. But while Genentech monitors women who become pregnant while on Ocrevus, the number of reported pregnancies is too small to draw conclusions about the treatmentās safety in pregnancy, and researchers do not know if Ocrevus also depletes B-cells in the fetus or in the baby born to a treated woman.
June 23, 2017 News by Janet Stewart, MSc Genentech to Report on Ocrevus Success in Reducing Disease Progression in Relapsing and Primary Progressive MS at EAN Congress OcrevusĀ (ocrelizumab) significantly reduces disease activity and disability progression in patients with relapsing multiple sclerosis (MS) and primary progressive MS (PPMS), according to results of post-hoc analyses ofĀ Genentechās Phase 3 clinical trial program assessing the drug.
May 19, 2017 News by Joana Fernandes, PhD Phase 3 Study of High-Dose Biotin, MD1003, in Treating Primary and Secondary MS Patients Underway A Phase 3 clinical trial has been launched by MedDay Pharmaceuticals to investigate whether treatment with high-dose biotin (MD1003) may easeĀ disability and improve mobility in non-relapsing primary or secondary progressive MS patients. The study is recruiting participants across the U.S., Canada and Europe. Biotin is a form of…
March 31, 2017 Columns by Ed Tobias Scooters: Don’t Let Pride Block Your Path to Independence To scoot or not to scoot? Is is better to drag your legs around for as long as you can, or to give in and get yourself a set of electric wheels? That decision prompted the following vent on a multiple sclerosis Facebook group recently: “I’m just…
March 14, 2017 News by Charles Moore Clinical Test of Rex Robotic Device as Rehabilitation Aid for MS Patients Starting in UK A clinical test of whether bionic robotics can improveĀ mobilityĀ in peopleĀ with relapsing orĀ progressive forms of multiple sclerosis (MS) and considerable disability is now recruiting participants, after being approved by the U.K. National Health Service’s Health Research Authority (HRA) ethics committee. The trial, called RAPPER 3Ā (Robot Assisted Physiotherapy Exercises with Rex…
February 9, 2017 News by Patricia Silva, PhD Shoe Insoles Meant to Make Walking Easier for MS Patients to Be Tested in Australia A specialty shoe insole that mayĀ helpĀ multiple sclerosis (MS) patients walk and go about their daily lives with more assurance and ease was developedĀ by an Australian-led research team, which is now seeking 176 patientsĀ to test the insoleĀ in a three-month trial. The study is led by Anna Hatton, a physiotherapy professor…
January 13, 2017 Columns by admin Like These Athletes, We All Should be Putting Our Best Feet Forward Itās often said of the 2.5 million of people in the world who have multiple sclerosis that no two have the same symptoms. Indeed, that is why it is known as the Snowflake disease. And the wide variety of symptoms can be well-illustrated by looking…
November 10, 2016 News by Charles Moore Canadian Firm Opens Clinics to Train People Using Its Keeogo Walking Assistance Device B-TemiaĀ announced the launch of its “b-Klinic Mobility” business unit, offering clinical services, information, training, and ongoing support to patients and healthcare professionalsĀ who use the company’s Keeogo walking assistive device. Keeogo is B-Temia’s first product in the class of dermoskeletons, designed to assist persons with mobility-related challenges that limit…
October 7, 2016 News by Charles Moore University to Use New Balance and Mobility Trainer for Therapy, Research The University of St. Augustine for Health Sciences (USAHS) recently installed a state-of-the-art SafeGait 360 Balance and Mobility TrainerĀ on its Austin, Texas campus. The device isĀ a ceiling-mounted body-weight support and fall protection system that tracks patient movements 2,500 times per second. The trainer was designed in collaboration with…
September 20, 2016 News by Patricia Inacio, PhD #ECTRIMS2016 – MS Patients Achieve Sustained Improvements in Mobility with Ampyra A recent study showed that the clinical benefits offered by Ampyra (fampridine) in improving mobility among multiple sclerosis (MS) patients hasĀ clinical significance. The results were shown in an oral presentation, āSustained clinically meaningful improvements in walking ability with prolonged-release fampridine: results from the placebo-controlled ENHANCE study,ā atĀ the European Committee for…