living with MS

Cathy Tolk, a multiple sclerosis (MS) patient and a motivational speaker, has opened a website that features her weekly articles, video blogs or  vlogs, inspirational messages, and mentions of two published books. Tolk, who lives in Connecticut, was diagnosed with MS in 1995 after years of bringing joy to…

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…

I recently sent my neurologist a thank-you card. A friend of mine was incredulous and truly baffled at my gesture. “Why would you thank your doctor?” she asked. Why wouldn’t I? I am thankful for my doctor’s wisdom and also her heart. She is an elusive hybrid of extreme intelligence…

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.

Relationships between multiple sclerosis patients and their intimate partners were enhanced when the couple worked together to make lifestyle changes, and to develop skills to improve communication, a study shows. 

New guidelines from the American Academy of Neurology (AAN) recommend that people with multiple sclerosis (MS) keep up with regular vaccinations, including annual flu shots, but be sure to first advise their doctor on medications they are using. The guidelines were published in the journal Neurology, in the report…

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…

The out-of-pocket costs for self-administered disease-modifying therapies (DMTs) for multiple sclerosis (MS) patients on Medicare increased more than sevenfold from 2006 to 2016, according to a new study. This was reported by researchers at the University of Pittsburgh in a…

The relationship between fatigue and patterns of physical activity in people with multiple sclerosis (MS) is not straightforward. New findings show that, among MS patients with similar fatigue levels, there are three different types — or “clusters” — of physical behavior. Clinicians should be aware of these behavioral…

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,…

Last week, CNN’s Anderson Cooper broadcast an interview with “The Late Show” host Stephen Colbert. They had a lively discussion about comedy, politics, careers, and the like, but perhaps the most stunning eight minutes of the interview were focused on grief. Colbert, a devout Catholic, said, “It’s…

I was struck down by sclerosis in 2006 — literally. I was playing tennis and ran to return a drop shot. I never made it, but I did drop myself and rupture my right shoulder. It was so severe that it took two operations to rectify. The first few years…

Choosing which MS medication to use is one of the most difficult decisions for someone with MS and their neurologist. After 39 years with MS, and with four disease-modifying therapies (DMTs) on my medical chart, I’m definitely on the hit-it-fast, hit-it-hard side of that treatment decision. So, I was…

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 National Health Service (NHS) England announced an initiative that aims to speed diagnoses and ensure better all-around care for people with progressive neurological conditions like multiple sclerosis (MS), Parkinson’s disease, and motor neuron disease (MND). Experts at NHS England, as part of the NHS RightCare…

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…

“Diet is profound. Lifestyle is profound. All patients should be taught how profound these things are.”  — Terry Wahls, MS thriver and founder of the Wahls Protocol  Western medicine has long approached multiple sclerosis (MS) and autoimmune disorders through traditional methods. While there have been…

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 had a lumbar puncture to help diagnose your MS?” from Jan. 29.

The 11th annual “Burgers to Beat MS” day is set for Aug. 22 in Canada, with $2 from each purchase of an A&W Teen Burger going to the MS Society of Canada to support people living with multiple sclerosis (MS). Supporters may also round up their in-restaurant bill to the nearest…

This month marks the third anniversary of my column, “The MS Wire.” After writing two columns a week for most of those 156 weeks, it isn’t always easy to come up with fresh ideas. Tonight was one of those nights. With my deadline approaching, my well of ideas was…

Opioid addiction increases the risk for a number of physical and psychological problems in people with multiple sclerosis (MS), a new study has found. The study, “Impact of opium dependency on clinical and neuropsychological indices of multiple sclerosis patients,” was published in the journal Neurological Sciences. Opioids,…

I am now 41, at the beginning of “middle age,” and I’m tempted to give it the middle finger. It’s a halfway point, a layover, a way station — a time to contemplate the journey so far and take steps for the bit that is to come. Because I have…

I’ve been a co-moderator on the MS News Today Forums for a couple of months now and recently wrote a reply to a newly diagnosed patient, Jono. He’s only had MS for a month. I found myself writing what I wished I’d known when I was diagnosed. Now,…

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:…

I am quite outspoken. I have no problem voicing my opinion or needs — or so I thought. An exchange this morning left me speechless. While my head was swimming with semi-intelligible responses, I was rendered mute. Let me just say that I have been on pain medication for…

Medical cannabis products, jointly developed by GB Sciences Louisiana (GBSL) and the Louisiana State University Agricultural Center‘s (LSU AgCenter) Therapeutic Cannabis Program, are now available for purchase by qualified patients with illnesses that include multiple sclerosis (MS) at nine state-licensed pharmacies. The decision, announced by the Louisiana Department…

“It could be worse.” That’s a phrase I say to myself when I feel defeated by my multiple sclerosis (MS). When I am exhausted or just feeling “off,” I think I about how much worse my situation could be.   I speak for myself…

The U.S. Food and Drug Administration (FDA) has approved Bracco Diagnostics’ oral suspension of barium sulfate, called Varibar Thin Liquid, for use as imaging agent to detect swallowing disorders known as dysphagia, a problem common among multiple sclerosis (MS) patients. In the U.S., 1 in 25 adults are estimated to…

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…