living with MS

I just saw a couple of “golden tumbleweeds” swirl past my feet. My attempts at keeping a clean house are no match for Abby’s ever-falling golden locks, and I am OK with that. There was a time when those two balls of hair would have elicited profound anxiety. The anxiety…

Atrophy (shrinkage) of brain lesions correlates with physical disability in patients with multiple sclerosis (MS), new research reports. The study, “Atrophied Brain Lesion Volume: A New Imaging Biomarker in Multiple Sclerosis,” was published in the Journal of Neuroimaging. Magnetic resonance imaging (MRI) scans are used routinely on MS patients…

My philosophy about living with MS is written on a plaque hanging on the wall in my home. It reads: “Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain.” Olga Bobrovnikova doesn’t dance in the rain. Instead, she plays the piano.

Growing up in a spiritual family, I can remember hearing the words “we are not going to claim it.” These were words of comfort, hope, and support when a catastrophic event was impending. The dictum was to pray, believe in what you pray for, and to “not claim” whatever…

The royal blue kite struggled to stay in flight; the winds remained fickle on our day at the beach. I was mesmerized while watching a man and woman so fervently trying to manage the small diving diamond in the sky. The more I watched, the clearer the metaphor…

A survey of multiple sclerosis (MS) patients that looked at their sense of social identity based on their family relations — meant to help explain mood disorders like depression and anxiety seen in this population — found a clear link between the strength of family bonds and mood, a U.K. study…

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.

I never kept a diary. I did sometimes muse about it but reckoned I’d never become famous enough for one to be useful. Well, at least in that I was right. Until the rise of the smartphone, anniversaries and birthdays were flagged by my oldest son, who has the gift…

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…

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,”…

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…

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…

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…

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…

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…

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…