Daily living

I have been fighting multiple sclerosis (MS) for seven years now. I’ve changed a lot since getting diagnosed. I’ve become more aware of my body and the ways MS has changed my life. Nothing stopped me from graduating from college, but I’ve still faced many challenges…

I’ve been whinging for months now about struggling on through near-constant urinary tract infections. This week’s joyous occasion was finally having a poo (hurrah), but then not having the energy to do anything about the result (boo). I’d spent something like five hours attacking the problem with my new…

“Events, my dear boy, events.” Because of my own political proclivities, I don’t tend to quote old Conservative prime ministers, unless, of course, it’s Winston Churchill. In his semi-youth, he crossed the floor to join the Liberal Party twice: “Anyone can rat, but it takes a certain amount of…

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…

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 “When do you tell your employer about your MS?” from Jan. 15,…

Mama said there would be days like this. I just never thought there would be so many. After three days of insomnia, I am heavily fatigued and weary. I wait, bleary-eyed, for signs of pain to appear, watching the sunrise and praying for renewal. As if on cue, the birds…

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…

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 “How do you feel about journaling? It’s a good way to keep track of…

Using smartphones and smartwatches to monitor disease course via the FLOODLIGHT app leads to high adherence and satisfaction among patients with multiple sclerosis (MS), results from a pilot study show. The research, “Adherence and Satisfaction of Smartphone- and Smartwatch-Based Remote Active Testing and Passive Monitoring in People With Multiple Sclerosis: Nonrandomized Interventional Feasibility Study,” was published in the Journal of Medical Internet Research. Assessing MS progression commonly requires periodic in-clinic visits, and doctors may miss subtle changes occurring between such visits. Smartphones may be a solution for real-time data collection and better patient monitoring outside the clinic. The Roche-sponsored FLOODLIGHT study assessed the feasibility of using smartphones and smartwatches to assess MS symptoms, including hand function, gait and posture, mood, and cognitive impairment. FLOODLIGHT primarily evaluated adherence and feedback to the smartphone- and smartwatch-based assessments, as well as the participants’ satisfaction, as determined by their impact on daily activities. The study included 76 MS patients (ages 20 to 57; 53 were women) and 25 healthy controls, who were recruited at the Multiple Sclerosis Centre of Catalonia in Barcelona, and the University of California, San Francisco. Most patients (91%) had relapsing-remitting MS. The mean time since symptom onset was 11.3 years, and the mean Expanded Disability Status Scale score was 2.4. The test battery included active tests performed daily, weekly, every two weeks, or on demand for 24 weeks, and passive monitoring, which analyzed sensor-based gait and mobility. Participants were instructed to complete the active tests at roughly the same time every day, and to carry the smartphone and smartwatch with them all the time. Adherence was assessed via the proportion of weeks with at least three days of completed testing, and four daily hours of passive monitoring. Satisfaction was determined through a questionnaire. Clinical evaluations were conducted at the study's start, after 12 weeks, and at the study's end. Brain magnetic resonance imaging scans were taken at the enrollment visit and at week 24 (study's end). Most participants finished the study – 92% of MS patients and 64% of the controls. Reasons for discontinuation included the burden of continuous monitoring and lack of availability for the three required in-clinic visits. Over an 18-month period, from November 2016 to April 2018, most participants performed five to seven active tests per week, including the Two-Minute Walk Test (2MWT). Adherence to both active tests and passive monitoring for the 24 weeks was good, and remained stable over time after week six. In the final week, participants had a minimum of four hours of passive monitoring data over an average of four days. Adherence was higher for passive monitoring than the tests. Data showed that 70% of participants completed all active tests, 75% did all active tests except the 2MWT, and 79% had data collected via smartphone- or smartwatch-based passive monitoring. The longer a person's disease duration, the lower was their adherence. In contrast, disease severity was not seen to impact adherence. Overall scores reflecting satisfaction was 73.7 out of 100 at week 24, having remained stable since week 12. Sixty-one patients reported that the test battery had an at least an acceptable impact on daily activities. Thirty-two had no issue with the active tests, while one-third would rather avoid the 2MWT. A majority, 60%, of the MS patients said they would like to continue using the FLOODLIGHT app to better understand their disease and improve its management. “Persons with multiple sclerosis were engaged and satisfied with the FLOODLIGHT test battery,” the scientists wrote. As such, “FLOODLIGHT sensor-based measures may enable continuous assessment of multiple sclerosis disease in clinical trials and real-world settings.” FLOODLIGHT tests are being assessed in long-term studies with larger patient groups in the CONSONANCE Phase 3b trial of Ocrevus (ocrelizumab, by Roche-owned Genentech) in people with progressive MS still enrolling, contact information is here), and in a global study open to all MS patients with a mobile device, called FLOODLIGHT Open.

Things had been going well with my electric wheelchair, but now I found myself out of control, heading toward the TV. I put my one good foot down in a feeble attempt to delay what seemed inevitable. Somehow, the foot — or perhaps sheer good luck — saved the TV.

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 “How do you feel about journaling? It’s a good way to keep track…

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,…

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 “Have you ever had an MS hug? What does it feel like?”…

It is the most wonderful time of the year. Sounds of commentator calls, audibles, and cheering crowds fill the house. A familiar sense of calm envelops my being. It is football season. I sometimes wonder how I survive the offseason. I was raised in the San Francisco Bay Area…

The joys of MS are never-ending. One area that gets disrupted by this disease of the central nervous system is our pelvic regions. That affects bladder, bowel, and sexual function. I’ve written about all of this in previous columns. My bladder failed less than two years after I…

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,…

I have too much stuff! Why is this relevant? By the end of this column, I hope that you will comprehend my message. For the past few weeks, I have been cleaning out my closets. I hadn’t realized how many items I had collected over the years. As I go…

July was unusually hot in much of the Northern Hemisphere. So, pull out your electric fan and use it to help your multiple sclerosis (MS) beat that heat and humidity, right? Maybe not. A study recently published in the Annals of Internal Medicine reports that using a fan to…

Over the past several weeks, I’ve been using an app called Floodlight to track my ability to live with my multiple sclerosis (MS). It measures things such as my balance, finger dexterity, walking speed, and cognitive ability. It even knows if I’m keeping myself shuttered in my apartment or…

Living with MS can sometimes feel like you’re performing a one-woman (or man) show. Think about it. How many times have you pretended to be OK when you didn’t feel so hot? Have you ever shown your loved ones a brave face instead of upsetting them? Ever caught yourself acting…

It’s 1 p.m. in the U.K., and it’s 90 degrees Fahrenheit. I can hardly move due to the heat. My left hand is typing this. The rest of my body has shut down. Tomorrow is forecast to be the hottest July day in recorded history in the U.K. I had set…

Living with multiple sclerosis (MS) is a process of loss — of mobility, brain function, and independence. We can lose relationships and jobs. For most of us, these losses are forever. A woman who commented today on a column I wrote a few weeks ago said that she is…

OK, this was my first test. Accomplish this and Day One should be a breeze. The trick is not to panic. You’ve crossed a continent with your thumb — now all you have to do is get out of bed on your own. You manage it most days…

Have you ever read something and thought, “This is me, this is my MS”? It happened to me today as I read a post by Rachel Horne on the BartsMS blog. Horne writes about how some of us adapt to our MS diagnosis better, or at least differently, than…

For the last two weeks or so, I’ve begun my mornings by slapping on some makeup and, with my hair in hot rollers, sitting down to read a page or two from John Updike’s last collection of verse, “Endpoint and Other Poems.” The book has several standout pieces, but…

It was such a jam-packed week that the flavor was definitely multi-fruit! It included a meet-cute with a barber inspired by Richard Curtis (rom-com writer of “Notting Hill” and others). As no romance — or indeed, bromance — was involved, it was more of a meet-cut. I’ve…

The glow of the fireworks bathes the surrounding trees. A kaleidoscope of blue, yellow, and red illuminates the night sky. It is a day of picnics, parades, and pyrotechnics. It is the Fourth of July, when Americans celebrate gaining their independence from Great Britain. I can relate to celebrating…

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,…