Ah, the sequel. Back in April, I wrote about getting an electric wheelchair and then spending hours working out how to get it going. Six months later, I may have cracked the challenge of driving it without putting cracks in my house. When a district nurse visited last…
mobility
Under Pressure
There’s always something. The trouble with a mélange of complex medical issues is that one good action often can lead to a bad secondary one. It’s like a game of consequences that unfortunately not only injures your psyche, but also leaves a mark on the body. In my case, it…
People whose advanced progressive multiple sclerosis (MS) limits their mobility can strengthen their lower limbs and improve life quality by engaging in regular standing exercises in their homes, a U.K. study into physiotherapy programs for this patient group reports. The study, “Assessment…
I looked at the road, then west to the horizon. It was the Trans-Canada Highway. I was standing just outside Halifax, Nova Scotia. A 23-year-old intending to hitchhike the length of the Trans-Canadian to Vancouver. I’m English but knew this was a rite of passage for young Canadians.
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…
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…
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…
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…
A clinical trial to test the effects of antioxidant treatment with lipoic acid on progressive forms of multiple sclerosis (MS) is recruiting 118 participants at seven sites in North America. The study sites include: Birmingham, Alabama; Burlington, Vermont; Portland, Oregon; Salt Lake City, Utah; Seattle, Washington; Washington, D.C., and;…
Five finalists remain in the running for the $1 million prize being offered in the Mobility Unlimited Challenge, a global competition 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.
“You’ve had a haircut — 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…
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 how physical exercise works to improve cognition and mobility in people with multiple sclerosis, and using what’s learned to create new types of rehabilitation therapy for MS patients. PRIMERS, conceived by a team led by researchers the…
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…
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. The study, “…
Lesser time spent 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 and spinal muscular atrophy,…
Treatment with umbilical cord stem cells was found to be safe and leads to sustained improvements in disability and brain lesions of multiple sclerosis (MS) patients, according to a clinical trial. The study, “Clinical feasibility of umbilical cord tissue-derived mesenchymal stem cells in the treatment of multiple sclerosis,” was…
Into the Woods
Well, I’m usually fairly upbeat, but this time, it’s going to be beyond me. We’ve all had relapses — I think I’m in the fitting cliché of being on my last legs. I can, on a good day, transfer on my own from the bed to my trusty…
What I’m about to write will sound like I am tooting my own horn. I’m not. Really. But something is working for me in my battle to navigate the stairs in our house, something that might help others…
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…
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…
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…
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 I was. Maybe. Just a little. I was walking a bit more smoothly, my left foot…
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…
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.
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 — figures that demonstrate Ocrevus’ impact on patients’ lives, as well as Ocrevus’ ability to slow the decline in walking ability and other types of disabilities are comparable between patients with relapsing and primary progressive disease — 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 treatment’s 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.
Ocrevus (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 of Genentech’s Phase 3 clinical trial program assessing the drug.
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 ease 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…
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…
A clinical test of whether bionic robotics can improve mobility in people with relapsing or 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 3 (Robot Assisted Physiotherapy Exercises with Rex…
A specialty shoe insole that may help multiple sclerosis (MS) patients walk and go about their daily lives with more assurance and ease was developed by an Australian-led research team, which is now seeking 176 patients to test the insole in a three-month trial. The study is led by Anna Hatton, a physiotherapy professor…