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…
Users of the disease-modifying therapy Ocrevus (ocrelizumab) share a common complaint: the length of time the infusions take. It may seem petty, but an Ocrevus infusion consumes nearly an entire day. My typical infusion involves checking into the clinic, being screened by the infusion nurse for any changes, taking…
When I think of multiple sclerosis and falls, I tend to think about people who are upright and walking when it happens. I hadn’t considered the risks for people who spend most of their waking hours using a wheelchair or a scooter. Many studies have looked at people with MS…
You know that the use of marijuana as a medicine and its derivative cannabidiol (CBD) is close to being widely accepted as a useful natural product when articles about its pain-relieving properties appear in Consumer Reports. Yes, I’m referring to the nonprofit magazine that provides unbiased ratings on products…
In the research world, references to breaking down silos abound, and we’re not talking about those found on the farm. These figurative silos are where information is contained and not shared outside of a particular area. Researchers work within their own organization, rarely sharing their work with others doing…
Exercise and multiple sclerosis are a natural pair and shown by research to be an important part of our MS care plan. We all can benefit from getting an assessment by a professional therapist and having an exercise plan customized for our MS, but accessing exercise in a…
I am excited and thankful to share with you a new collaboration between iConquerMS and the National Multiple Sclerosis Society (NMSS). For several years, I have worked with the people at the Accelerated Cure Project (ACP), a nonprofit organization that is the overseeing body for iConquerMS, to…
In a previous column, I wrote about circumvention tourism, in which patients travel to another country to access a medical treatment that is unavailable in their home country. I wrote it in response to someone in the MS community who promoted travel to an offshore island…
Medical tourism is a term describing when people seek medical care by traveling from home countries to somewhere else. It’s an area of commerce that has existed for centuries, as people in ancient Greece once traveled to far away islands to visit healing gods. Medical tourism continues today, and…
Medical cannabis has created a dilemma for medical providers who care for people who might benefit from its use. I’ve been thinking more about this lately because my home state of Ohio will have legal medical marijuana dispensaries starting on Sept. 8. The law passed in 2016, and it…
Ohio, my home state, is wrestling with the nuances of medical marijuana laws that become effective on Sept. 8, 2018. My husband’s work email had an important notice from the Bureau of Worker’s Compensation (BWC) about this pending change, and as I read it, I thought that nothing really…
Last week, my husband and I attended an outdoor concert in a small venue that we used to regularly attend just a few years ago, before my MS affected my mobility. Our last concert there was two years ago, and although I was skeptical about going, the weather was perfect, and…
There are many things that confuse me, particularly in the medical area. Perhaps that’s why I am more comfortable thinking about MS patients’ quality of life rather than being into the hard science of medicine and understanding how medicines work. I’m thinking in particular of botulinum toxin, more…
I was talking on the phone with a friend who also happens to have MS. I warned her the extra noise was from me opening the stack of mail I’d been avoiding for a couple of weeks. I have my bills set up for auto-pay, so I was in…
One thing we’ve all hoped for with our disease-modifying therapies (DMT) is a treatment that will improve our multiple sclerosis (MS) and not just keep it from worsening. The latest studies presented on Ocrevus (ocrelizumab) hold promise that this treatment may have finally arrived. According to recent reports,…
I’m a great starter. How about you? I start projects but often lack the time or motivation to finish them. Hence, I have bins full of yarn waiting to be turned into scarves and lots of seeds that were meant to be planted in the past growing seasons. It’s…
After a delay in treatment in late December thanks to a nasty head cold, and the after-effects of contracting the flu in February necessitating another delay, I finally received my second six-month dose of Ocrevus (ocrelizumab) in mid-March. Much like the first time, the infusion was uneventful. I had no…
Have you ever been touched by the actions of one of your doctors? I hope we all have experienced special moments with our care providers because these times break down the authoritarian nature of medicine and allow us to interact as people rather than patients. A heartwarming moment took…
Fatigue. That No. 1 symptom that a large majority of people with multiple sclerosis are affected by. MS fatigue. It can be crushing, numbing, and stop the hardiest person in their tracks. I know MS fatigue all too well because it affects me all the time. Combating MS…
Sometimes they are called “sticky songs,” better known by their common name “earworms.” Earworms are those musical phrases that get stuck in our head that we hear over and over. It’s much like those worms underground that burrow and twist and turn, constantly finding new territory to inhabit.
While at the ACTRIMS Forum 2018 (which stands for Americas Committee for Treatment and Research in MS), I was surprised to see a colorful display of orange-and-teal colored sock monkeys mixed in with the pharmaceutical company and advocacy organization displays. It was the display booth for Oscar…
I fell out of sight in February, thanks to a case of the flu. Influenza B and its lingering side effects took me out of action from almost everything except sleeping, but I’ll save those details for another story. As I come out of my flu-induced fog, I see…
Engaging all types of people for research isn’t just a nice thought. It is critical to obtaining research results that will be meaningful. Middle-aged white women are often the people who volunteer for studies. Men, young people, and most significantly, people of color, lack representation in studies. According…
Quality of life. These three words conjure different images for people, depending on their needs. Quality of life could mean having improved health, good relationships with others, and stress-free life. In the world of medical research, quality of life (QoL), is an endpoint result that is often understudied…
By now, I had planned to give you an update on my current multiple sclerosis disease-modifying therapy Ocrevus (ocrelizumab). But one thing living with multiple sclerosis teaches us is to not count on plans always working out as we had hoped. Timing really is everything…
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…
My neurologist orders an annual MRI to see if any major changes have occurred, and last year my imaging included NeuroQuant software. NeuroQuant is still relatively unknown in the multiple sclerosis patient community. It is a measuring software that gives us real numbers we can comprehend instead of subjective…
There is often alarm and confusion about the JC virus, how we get it, and what it means to people with multiple sclerosis. This is my quick primer to help address these questions in a very basic way. What is the JC virus? The first person identified with this…
Editor’s note: This is the second of a two-part series on readers’ comments about Ocrevus (ocrelizumab). Read part one here. Last week, I responded to a few comments on columns regarding my personal experience with Ocrevus (ocrelizumab). Here are more reader comments and my answers.
Editor’s Note: First in a two-part series on readers’ comments about Ocrevus (ocrelizumab). I switched disease-modifying therapies and began treatment with Ocrevus (ocrelizumab) in June. I previously wrote about my reasons for switching, my experiences with the first two doses, and more recently, about any…
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