Living with MS

The trouble with being a mythological supernatural being is that you begin to doubt your own existence. It was all “Marvel this” and “DC that” over kids’ toy choices these past few years. Dads tried to be above that sort of thing, but He knew how thrillingly pleased…

This will be my final column for this year because of the Christmas and New Year holidays. Rather than ending 2017 with another 500 or so fascinating words from me, I’d like to leave you, instead, with this video. It was produced by a group of young Europeans…

Editor’s note: Tamara Sellman continues her occasional series on the MS alphabet with this column referencing terms starting with the letter “O.” Symptoms of MS Optic neuritis This is a common symptom of MS, though not everyone who experiences optic neuritis…

  They say a near-death experience will invoke a montage of your life in a matter of seconds. Gratefully, I have not had the experience to find out if this is indeed a truism, but I recently experienced a mini-mélange of my own. I read the mail, more specifically the…

It’s that time of year when everyone is asking: What would you like for Christmas? Shopping for the perfect gift for me is a challenge because I’ve been around long enough to have most of the things I want or need. In fact, we have so much that at…

IMPAQ Health has created a calculator that will help New York State residents compare the cost of hundreds of health insurance plans. The NYPlanCosts Calculator should be particularly beneficial to people with one of eight chronic conditions — multiple sclerosis, rheumatoid arthritis, heart disease, hepatitis C, diabetes, HIV, schizophrenia, breast cancer and…

This year, I wrote several articles about gut health because, in addition to MS, that’s what I’m currently battling. Writing is cathartic, so when an issue hits close to home, pouring words onto paper … er, a laptop, is a godsend. It’s like having a…

One of the most frustrating aspects of my MS is a frequent feeling of tightness and pain. The sensations may be in my arms, legs, or even in the trunk of my body in the form of the “MS hug.” Gabapentin helps to keep the pain…

I was just monkeying around while on vacation a few weeks ago, amazed that the animals jumping between my wife and myself were actually listening to the commands of their owner. I knew that chimps and apes were smart, but seeing monkeys respond to commands was new to me.

Christmas is just around the corner, and that’s why many people are on the fruitless quest for Fingerlings or hocking an organ to buy the new iPhone. Both might be the “hot” presents of the season, but neither of them holds a candle to the great gifts we…

It’s 4 a.m. and, unsurprisingly, I’m laying flat on my back. Yesterday, I had a whale of a time and now I feel like a beached one. I’m not in my own bed because I’m staying in a tres jolie bed-and-breakfast in Northern France. The trouble is the bed…

Be careful if you’re using high-dose biotin (vitamin B7). The biotin in your blood could lead to some false readings when you have that blood tested. The level of concern about this is high enough to warrant a warning from the U.S. Food and Drug Administration. High doses of biotin…

(Editor’s note: Tamara Sellman continues her occasional series on the MS alphabet with this column referencing terms starting with the letter “N.”) Symptoms of MS Neurogenic bladder Many people with MS experience problems with the bladder. A neurogenic…

I am tired, like beyond tired. I make tired look scintillating, and as funny as that sounds, it is anything but when trying to live your life. My spoons are numbered, and by midday, I am usually through all of them. Before you deem me crazy, I am referencing…

I am on “house arrest.” Sort of. Let me explain. Earlier this year, I wrote Large and In Charge: Building a Better MS Care Team, a column about my frustration with my “MS…

Gratitude is defined as the quality of being thankful; a readiness to show appreciation for and to return kindness. By definition, we can infer that, in addition to it being a quality, it is also an act. Gratitude is not an exact science, it takes practice, development, participation and…

Would you be more likely to stick to your MS drug schedule if being diligent lowered the cost of that drug? Biogen, which makes half a dozen MS drugs, including Avonex and Tysabri, seems to be betting that you would. It’s no secret that patients have…

A diet rich in vegetables, fruits and whole grains may decrease symptoms and lessen disease progression in patients with multiple sclerosis (MS), a study suggests. The report, “Diet quality is associated with disability and symptom severity in multiple sclerosis,” appeared in the journal Neurology. “People with MS…

In my angst-ridden teen years, I wrote poetry. It was truly dreadful and should have disappeared in the wash of personal history. Luckily, it was the mid-’70s, and in those pre-internet days, it was committed only in pen to scrappy paper rather than as a confessional to the…

You wouldn’t think that a guy who was diagnosed with MS more than 37 years ago would still be able to learn a thing or two about his disease. But that’s exactly what I did while on vacation about a week ago. I guess I really did know…

The Christmas season is upon us — decorations, shopping, and get-togethers dominate the month of December. If you tune into the Hallmark channel you will see this season as synonymous with love, laughter, and an abundance of cheer. With joy the prevailing theme it can be difficult to experience…

Whenever I turn the pages of my wall calendar to December, I look at the word itself ― DECEMBER ― and my heart fills with joy. And admittedly a little dread. Joy, because my husband and son have birthdays a week apart, it’s…

The National Multiple Sclerosis Society has endorsed the North American Registry for Care and Research in Multiple Sclerosis, a collaborative effort involving other multiple sclerosis registries, clinicians, researchers and patients in the U.S. and parts of Canada. NARCRMS is a public-private partnership, bringing together academia, industry, governmental agencies, and nonprofit organizations with an interest in MS. It operates under the auspices of the Consortium of Multiple Sclerosis Centers. It consists of a database of clinical records and patient-centered outcomes, providing clinicians and scientists with a greater and more integrated ability to track the incidence, prevalence and course of MS. Like many registries, NARCRMS includes data collected by physicians, like neuroimaging scans, genetic markers, cognitive assessments and specimen collection, and testing for identification of biomarkers of disease progression. It also adds patient-reported outcomes focused on disease challenges and impacts on daily life. Its goal is to improve the understanding of MS, facilitate multi-level care, and aid in recruiting patients into clinical trials. NARCRMS is the first open-source database to connect MS centers across North America to regional databases by state, region and zip code. To date, NARCRMS has recruited 10 centers, with another three in the process of coming aboard, and has enrolled 113 patients. The registry builds on North American Research Committee on Multiple Sclerosis (NARCOMS), the oldest patient-driven registry in the U.S. using patient experiences to advance MS clinical care and life quality. NARCOMS was created in 1993 by the CMSC. More than 37,500 people had joined the registry as of 2015. Researchers used NARCOMS data on 2014 to report on outcomes in switching treatments, therapy effectiveness, disease progression, co-existing conditions, and other topics that help understand the MS experience.

My journey in life has allowed me to connect with and meet people from all over the world. For this, I am blessed. I’ve met many diagnosed with MS and other chronic illnesses. All of our experiences are different and we have varying levels of support. A little while…

I’m worried about social media. Specifically, I’m worried about the many MS-related groups in the Facebook world. There are general MS groups and there are groups dedicated to specific MS treatments. I belong to several, and though there’s a great deal of useful information in these groups, there’s…

Editor’s Note: Bryan Bickell, a second-round National Hockey League draft for the Chicago Blackhawks in 2004, played his last NHL game as a forward with the Carolina Hurricanes in April 2017, some five months after being diagnosed with relapsing multiple sclerosis. Bickell played on the Blackhawks’ Stanley Cup-winning teams in…

  When a friend or loved one is going through a tough time, it’s hard to know how best to help. Do you help carry the burden? Would it be better to offer support from a distance and give the person space? Life can be hard and awkward and…

Shooting the breeze after work has been part of my professional life for 27 years. We’re all winding down, yes, but I’m actually still working. New ideas, niggles, gossip are thrown together over drinks. True, many of the younger generation’s beverages these days are non-alcoholic, so they tend not…

Editor’s note: Tamara Sellman continues her occasional series on the MS alphabet with the second of two columns about terms starting with the letter “M.” Symptoms of MS Marcus Gunn pupil This is a sign of emerging MS that may be discovered during what is known as the…

I find it incredibly ironic that the day after we pause to give thanks for whom and for what we have, we are breaking down doors and fighting one another in the name of Black Friday. While easy to proclaim in the fervency of the season among family…