MS medications are expensive. Many people with MS are able to afford their high prices only because their insurance covers most of the cost, and what remains as their copay is often covered by many of the pharmaceutical companies that produce those meds. The companies offer patient assistance…
Living with MS
Two groups working to collect and promote patient-reported outcomes (PROs) in research and treatment for multiple sclerosis (MS) announced they will jointly explore ways to “standardize and harmonize” these measures so as to make them more effective. The effort brings the iConquerMS People-Powered Research Network, managed by the nonprofit Accelerated Cure Project…
Yesterday, the clerk at the grocery store asked how I was feeling. Having known her for 15 years, I glanced at her over the rim of my sunglasses and we shared a knowing laugh before moving onto inane topics. She knew exactly how I was feeling without my saying a…
In general, multiple sclerosis (MS) patients are able to make and sustain healthy lifestyle changes associated with a better quality of life, a study shows. The study, “Health outcomes and adherence to a healthy lifestyle after a multimodal intervention in people with multiple sclerosis: Three year follow-up,”…
Running (Wheeling) on Empty
Arguments over nothing and everything are, in my experience, induced by extreme stress. When my wife and I were at full bore working together, this often happened. Not at work — there wasn’t time — and we were professional. Domestically, what little downtime we had would often be spent…
Learning impairments in multiple sclerosis (MS) are detected differently by the two most commonly used neuropsychological tests, a new study by the Kessler Foundation shows. The research, titled “Comparing the Open Trial – Selective Reminding Test results with the California Learning Verbal Test II in multiple…
Awareness is, at times, barely imperceptible, a quiet conviction that lies within. As with most truths, they are self-evident long before we decide to own them. And when we do, it is as if we have opened our eyes for the first time. My eyes are open. Living with progressive…
Spring has sprung! As I look around, Mother Earth is in bloom. Trees are sprouting new leaves, plants are growing, and the grass is green once again. I love spring and all that it represents — hopes for new birth and rebirth. For those who are unaware, May is Mental…
I Have MS and I’m Very Lucky
National Nurses Week was earlier this month. I’m a little late saying it, but, “Thank you, nurses.” And doctors. I’m really a lucky guy. Lucky to have had fabulous nurses. Lucky to have had a couple of top-notch neurologists. My luck began in August 1980 with Dr. Stanley…
Sativex, a cannabis-based anti-spasticity medicine commercialized as oromucosal spray by GW Pharmaceuticals, improves the driving ability of patients with multiple sclerosis (MS), according to researchers. The findings were published in the journal Brain and Behavior, in a study titled “The influence of THC:CBD oromucosal spray…
When the Bomb Goes Off
It’s easy to be lulled into a false sense of security, to think you’re the supreme authority in your life. And when that ersatz truth is ripped away, as it was for my husband and me the last week, it can be hard to regain your footing. I’ll spare…
Chained to My Desk
The tinkling laughter of tiny children filters through the windows of my bedroom. It’s a sunny Sunday afternoon. In years past, I would be sitting in the garden watching my grandnieces play. Undoubtedly with a large jug of Pimm’s that I would have concocted for the assembled adults. We’re…
Quality healthcare is imperative when living with a disease such as multiple sclerosis. While the operational definition of “quality” varies from person to person, I find it to be contingent on the same variable: the doctor/patient relationship. A relationship between a doctor and a patient is symbiotic. Any healthcare…
A new survey by the Kaiser Family Foundation finds that healthcare costs in the U.S. are increasing faster than general inflation. As character Private Gomer Pyle used to say on his 1960s TV show, “Surprise, surprise, surprise!” Really, those of us with a medical problem such as MS…
Julie Roberts, a country music singer and multiple sclerosis (MS) patient advocate, will perform at the upcoming Consortium of Multiple Sclerosis Centers (CMSC)’s annual meeting, the association announced Roberts, diagnosed with MS while making her second recording in 2005, will also attend CMSC sessions to learn more about…
We all have taken advice or read about how to manage our multiple sclerosis (MS) symptoms. And we can share with our doctors, spouses, children, or friends about our experiences. But a far better emotional therapy is empathizing with a fellow MS warrior. People can’t understand living with MS…
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…
A little over a year ago, in this column, I asked if it was safe for someone with MS to handle a gun. I wondered whether there would be safety issues due to problems with grip strength, balance, eyesight, and all the other various difficulties people with MS have…
Young adults living with multiple sclerosis (MS) will now be able to experience a variety of outdoor adventures thanks to a new adventure-based healing program created through a partnership between Velocity Global and First Descents. First Descents offers free trips to young cancer patients to help empower…
My Scars Are Beautiful
Our life experiences shape and define who we are. While some wash over us and dissipate, others leave indelible impressions. Both emotional and physical, our scars hold our past and influence our future. We are the totality of these scars and their narrative is powerful. Each is a chapter in…
Curatio and BioScript Solutions recently launched a mobile patient engagement platform designed to provide multiple sclerosis (MS) patients with a way to connect, share experiences, and gain new knowledge. The private, free social network app was introduced at the recent HLTH conference, which took place May 6-9…
I’m agonizing over an important decision and it’s driving me crazy. I’m usually a quick decision-maker, but this one is tough. I have my analytical hat on, trying to look at my choices from a scientific standpoint. Unfortunately, my anxiety kicks in, and my hat…
Improving financial support programs for those living with multiple sclerosis (MS) would increase workforce participation and boost economic activity, concluded a report published by the Conference Board of Canada in March, which was Multiple Sclerosis Awareness Month. Today, about 100,000 Canadians live with MS, making Canada one of…
As some have said, “Pain is inevitable; suffering is optional.” I believe I am an optimistic, grateful, and spiritual woman. With that said, I must acknowledge that I have an irresolute reaction when I hear that suffering is optional. Suffering is defined as the state of undergoing pain, distress,…
Despite increasing prevalence, multiple sclerosis (MS) continues to fly under the radar with only 40 percent of Australians ranking MS as a community health priority, highlighting the need for greater awareness. Estimates show that 25,600 Australians live with MS — an increase of 4,400 over the past eight years.
For Multiple Sclerosis Awareness Month and leading up to May 30, World MS Day, EMD Serono, Canada, is taking a virtual reality program to three Canadian cities to help educate people about multiple sclerosis and its impact. The biopharmaceutical company wants to help people better understand what it…
I Am So Much More than My MS
Every personality test and trait indicator quiz I take tells me the same thing: I’m a polymath. Basically, it’s a fancy Greek word meaning “a person of wide-ranging knowledge or learning.” I take delight in gathering interesting facts or stories. I take pleasure in learning for learning’s sake. (Hence,…
Knowing Me, Knowing MS
The problem with writing a weekly column is I always need to come up with new ideas. Luckily, or rather, unluckily, MS always throws me a U.S. sports-shaped analogy — one of those trickily disguised curveballs. I wasn’t even going to attempt to write this week. Not because of…
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…
Let Go and Live
Six weeks ago, Abby, my golden retriever, had a seizure. I was sitting behind her when she began to rock; I have never moved so fast. I could only see the bloodshot whites of her eyes as she whimpered lightly and I began to wail. I intuitively hugged her,…
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