Today, I tried to run. In my mind, I saw myself running with fluidity. I felt a weightless ability to lift, then cycle each knee and foot in perfect rotation. I felt my foot lift up and off the ground. My drop foot prevailed, and I fell. Other than injured pride…
mobility
Help Design a Mobility Scooter
I’ve been using a mobility scooter for about 10 years. I use it anytime I need to walk more than about half a city block. I throw it in the back of my SUV, I’ve taken it on planes and cruise ships (I’ve ridden it in 15 or 16…
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…
Getting Out, Despite the Crowds
Last week, my husband and I attended an outdoor concert in a small venue that we used to regularly attend just a few years ago, before my MS affected my mobility. Our last concert there was two years ago, and although I was skeptical about going, the weather was perfect, and…
Taking My MS for a Sea Ride
I’ve been away for about a week, the first break of that length that I’ve had from writing about MS in about two years. Much of that time was spent on a trip from Long Island, New York, to Newport, Rhode Island, aboard the Mariner. Marine chart of…
Leaving a restaurant the other evening, I was stepping off an unusually high curb. Right cane down, left cane down, swing the right leg, swing the left leg, and … uh-oh. Down I go. I’d been asking for it. I’d needed to change the electrodes on the Bioness…
A new clinical trial will be the first in the world to recognize the importance of retaining hand function for wheelchair-bound patients with primary progressive MS (PPMS), according to a press release from Queen Mary University of London. The international trial, which will be conducted by a…
Anyone for Golf?
A family wedding in the gardens of a grand country house some 30 minutes from Oxford sounds idyllic. And indeed it was. Not, though, for anyone in a wheelchair. A deep pebble driveway at the front was impassable. It took very strong men to drag me backward a few yards. Going…
Treatment with Ocrevus (ocrelizumab) slows disability progression in primary progressive multiple sclerosis (PPMS) in ways that may be of considerable importance to patients — including the possibility of delaying the need for a wheelchair by up to seven years, according to new data from a Phase 3…
Is Your MS Ready for a Disaster?
Hurricane season began on June 1 in the Atlantic region. For people living along the coast, as I do, it’s time to plan for moving quickly. For people with mobility problems, planning is essential since, as you know, moving isn’t something that we do quickly. I wrote…
For ambulatory multiple sclerosis patients with mobility problems, perceptions of being at risk of falling are as important as the risk due to their physical condition — and both should be tested when evaluating fall risk in this patient population, a study reports. The study, “The relationship between physiological…
More investment and new technological developments are needed to assist people who have limited mobility because of lower-limb paralysis. That was the major conclusion of an international study undertaken by ComRes on behalf of the Toyota Mobility Foundation. Around the world, millions of people have lower-limb paralysis. In…
How Dare You?
If you read my last column, you’re well aware that there has been some drama around Casa de Hughes over the last few weeks. I can now happily say that the situation has been resolved and we’re trying to get things back to a more normal, humane pace.
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,…
Crawling to Deadline
It’s 3:15 p.m. U.K. time on Wednesday, May 9, 2018. My deadline for this column is actually 3 p.m. Gone are the days of blaming the dog for eating my homework; it’s only in the last few minutes that I’ve actually been able to move a bit. From 8:30…
Pairing wearable sensors with a computer program enables effective monitoring of the way multiple sclerosis (MS) patients walk in “real life,” potentially helping clinicians to better evaluate treatments and judge disability, a small U.K. study reports. The research, “Free-living and laboratory gait characteristics in patients with multiple…
Constraint-induced movement therapy (CIMT), a rehabilitation technique originally developed for stroke patients, may also be effective in improving limb use in the daily activities of multiple sclerosis (MS) patients, results from a Phase 2 trial show. Findings were reported in the study, “Phase II Randomized Controlled Trial of…
My morning ritual of showering for a fresh start to my day has progressed to a once-a-week occurrence. Like everything else that my multiple sclerosis (MS) affects, less shower time is not by choice. I take sponge baths daily of course, but actual showers are reserved for when I…
A Phase 3 trial testing an oral once-a-day therapy — ADS-5102 (amantadine) extended release capsules — in multiple sclerosis (MS) patients with walking difficulties has enrolled its first participant, Adamas Pharmaceuticals announced. The multi-center, double-blind study (NCT03436199) will assess ADS-5102 in about 570 such patients at five sites…
The U.S. Food and Drug Administration (FDA) recently cleared the myBioness mobile app, designed by Bioness, to be used with the L300 Go System to improve muscle strength in patients with multiple sclerosis (MS) or other conditions that affect walking. The L300 Go System is approved to help…
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…
AbobotulinumtoxinA, marketed as Dysport Therapeutic by Ipsen Biopharmaceuticals Canada, was approved by Health Canada for the treatment of lower limb focal spasticity in adults. Focal spasticity is a medical disorder characterized by an abnormal increase in muscular stiffness in one or more muscles, and usually is the result…
Why I Climb Trees
In March 2003, I found myself suddenly unable to drive or even walk a straight line through the house. MS had arrived with several active lesions in my brain, including one in the brainstem, which affected my balance and speech and created significant limitations in my usual activities. One…
So many of us are affected by disabilities, and day-to-day we strive to live our lives the best we can. The struggles due to these disabilities can consume a lot of our precious and sparse energy. Anything that can be modified in the home, at businesses, or anywhere we choose…
Having a Swell Time
The thing about becoming increasingly immobile is that your consumption of TV, radio, podcasts, books and, indeed, anything written goes up immeasurably. Luckily, one of the creative explosions in the recent years I’ve had MS is Scandi drama. I don’t know if it’s really penetrated the U.S. market, although…
Inhibiting an enzyme responsible for turning genes on and off can reverse damage to the myelin sheath that protects nerve cells, improving limb function, a multiple sclerosis-related study in mice shows. The research, which involved mice with sciatic nerve damage rather than MS, was published in the journal Nature Medicine.
Gait and balance issues and MS go together like peanut butter and chocolate. At least they do to me. In one way or another, they’ve been in the foreground of my life since I was diagnosed in 2013.
It’s nice when a negative experience can be turned into one that’s positive. I think that’s the result for a wheelchair-using MS patient following a problem she had at the Mall of America a few days before the Super Bowl. For those not familiar with the Mall of America,…
Ampyra (dalfampridine), approved to treat walking difficulties in multiple sclerosis (MS) patients, also helps with cognition and movement in the upper and lower extremities, according to a recent scientific presentation. These findings were reported at the 3rd Annual Americas Committee for Treatment and Research in Multiple Sclerosis (ACTRIMS) Forum 2018 in…
Carded at Costco
I was carded while at Costco with my son just before Christmas. Normally, I’m flattered when asked for ID, but this time was different. The request wasn’t from the cashier as my vodka rolled by, snug between the peppermint cocoa and persimmons. No, the request came from a police…