Being disabled constricts what my body does — but I’m still me. For a long time, I was trapped as I could no longer self-propel my self-propelled wheelchair. Then last summer, my powered one turned up! Wham-bam-crash-slam! Never delicate, I instantly got to slam around in my very own…
mobility
Clene Nanomedicine shared early results of the VISIONARY-MS trial, suggesting that CNM-Au8 — an investigational remyelinating therapy — leads to “notable” trends in better vision, as well as benefits in mobility and manual function in relapsing multiple sclerosis (MS) patients with chronic vision problems.
This is the story of how I became a patient columnist. Three years ago, I was still walking. Shambling, anyway. I could get up and down stairs but had to rest before reaching my ordinary car with fitted hand controls. To go somewhere on my own, I needed someone to…
Mayzent Helps Regulate the Immune System in SPMS, Study Shows Mayzent (siponimod) is one of several disease-modifying treatments that target specific T-cells and B-cells involved in damage to the myelin that protects our nerves. This study reports a significant reduction in these rogue cells within a year of starting…
When I wrote about April Hester two years ago, she and her husband, Bernie, had just finished hiking the 500 miles of South Carolina’s Palmetto Trail. That’s no small accomplishment for anyone, but it was a particularly special achievement…
Since being diagnosed with multiple sclerosis (MS) 20 years ago, Kathy Miska’s ability to walk has steadily worsened, especially in recent years. As a participant of a pilot study at the Cleveland Clinic Mellen Center for Multiple Sclerosis, however, she is cheered by the effect of…
MedRhythms is planning to soon open a pilot clinical trial to assess the safety and efficacy of its MR-004, its investigational product that uses rhythmic sounds to improve walking abilities in people with multiple sclerosis (MS), the company announced. The randomized and controlled trial, fully support by a grant…
It’s Only a Matter of Time
There was a time when I didn’t have deadlines. I’d finally finished academia. No more essays ever! In theory, I still had seven essays to write. Luckily, those essays could only improve my grade, so I got away with it. But only to a degree. I just scraped by with…
A common mutation in the fat-mass obesity (FTO) gene is associated with obesity and increased disability in people with multiple sclerosis (MS), according to a Kuwaiti study. The data, which showed no link between this mutation and an increased risk of MS, highlights the need for more studies about…
A grant awarded recently by the National Institutes of Health (NIH) will fund research to explore how brain changes in multiple sclerosis (MS) patients affect mobility. The five-year grant (1R01NS109023-01A1), totaling $3.5 million, was awarded by the National Institute of Neurological Disorders and Stroke, part of…
It happened on the coldest day of the season. It was 16 degrees F with wind chill. I was outside, using my electric scooter to take Joey, our cocker spaniel, for his early morning walk. Joey had just finished his business. I was tying the poopie bag when I heard…
This Could Be the Last Time
Fear grips me. Marijuana relaxes, eases pain, and helps my body work better. It also stirs paranoia, but only when you let it. In bed, a fretful waking dream. This is a problem when you actually have something to be paranoid about! I don’t remember all my last times…
By 2017, over 50,000 people with disabilities in the U.K. had lost their accessible vehicles due to reassessments required by Personal Independence Payment (PIP), a financial assistance program for people with disabilities. Motability Scheme is a program that provides financial assistance to help people lease an accessible…
FeetMe Raises €9.4M to Advance Gait and Posture Technology for Patients with Movement Disorders
FeetMe, a medical device company dedicated to the development of devices and digital health services to improve patients’ mobility, has raised €9.4 million ($10.25 million) in Series A funding to boost the commercialization of its innovative technology for clinical trials and regular clinical practice in hospitals and…
Mollii, an electrostimulation suit, can help reduce muscle stiffness, or spasticity, and its associated pain, as well as improve muscle activation in people with multiple sclerosis (MS), cerebral palsy, stroke, and other neurological injuries, according to Inerventions, the Swedish company that developed and markets it. With a few hours…
#ECTRIMS2019 – Early Ocrevus Use Slows Disability in PPMS, Including Risk of Wheelchair Reliance
Early and continuous treatment with Ocrevus (ocrelizumab) leads to a greater and more durable slowing of disability progression — seen for up to 6.5 years — in people with primary progressive multiple sclerosis (PPMS), according to long-term data on its use in PPMS patients in a Phase 3…
Mayzent (siponimod) reduces the risk of people with secondary progressive multiple sclerosis (SPMS) becoming dependent on a wheelchair, a new analysis of the EXPAND study shows. These findings further corroborate prior trial data demonstrating that Mayzent use delays disability progression and cognitive decline in SPMS patients. The results…
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…
I Dreamed That I Was Walking
When asleep, many people dream they can fly. Some dream about being naked in public, failing an exam, or (gasp!) about sex. Last night, I dreamed that I was walking. I have that walking dream a couple of times a year. I’m walking along and all of a sudden,…
People listening to music during an extended walk tend to sync their steps to its beat — and for those with multiple sclerosis (MS), such synchronization helps to overcome mental fatigue and improve motivation, a study found. “Continuous 12 min walking to music, metronomes and in silence:…
Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum. This week’s question is inspired by the forum topic “Do you suffer from the MS symptom of ‘drop foot?’” from Sept. 20,…
After a week of temperatures at 95 degrees or more making it too hot to swim, today was comfortable enough for me to get back into our condo’s pool. The water temperature was perfect and cool enough to keep me refreshed. I had the best workout I’ve had this season:…
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 love to travel and see new sights, but my multiple sclerosis (MS) mobility problems present particular challenges. Over time I have accumulated my own set of travel tips. Perhaps some of the following might make your next trip easier. Airline travel My trips almost always involve airline…
It’s taken over a year to conceive, organize, and plan, but yesterday, I was able to leave the house on my own. I even checked that I had my house keys on me as, in theory, I could now also get in on my own. This is not strictly true:…
Legos, it seems, are more than just a kids’ toy. People with some neurological conditions, including multiple sclerosis (MS), are using those little, colored building blocks to build better lives for themselves. An article in the latest issue of Brain & Life uses Kathleen Jordan as one example. Jordan,…
Nearly Thwarted by a Step
Even in my able-bodied days, I was hardly Channing Tatum — who is? Model, actor, dancer, singer, and he even has the audacity to be funny. There might not be any real comic book heroes in the world, but he is possibly the closest to an X-Man we’ve got.
A well-known mantra exists in the multiple sclerosis (MS) community. I first heard it after my diagnosis and have since adopted it as my own. “Move it or lose it.” Movement is essential for everyone’s health and well-being. For those of us with multiple sclerosis, it is imperative. Regular activity…
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.
When I think of multiple sclerosis and falls, I tend to think about people who are upright and walking when it happens. I hadn’t considered the risks for people who spend most of their waking hours using a wheelchair or a scooter. Many studies have looked at people with MS…