Living with multiple sclerosis (MS) is a process of loss — of mobility, brain function, and independence. We can lose relationships and jobs. For most of us, these losses are forever. A woman who commented today on a column I wrote a few weeks ago said that she is…
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Celgene and the Multiple Sclerosis Association of America (MSAA) are working together to bring the “MS MindShift: A New View of MS” campaign, which is raising awareness about the importance of brain health in multiple sclerosis (MS), to the 37th Annual QuickChek New Jersey Festival of Ballooning in Readington,…
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 Occupational Therapy Is Improving My MS Home Life” from April 15, 2018.
Judging a Book by Its Cover
I find airport newsstands alluring. I am drawn toward the litany of books. Shelves of colorful covers beckon to me, bestsellers emblazoned with enticing accolades. I need those books, I tell myself, so I buy two. Fortunately, my shallow criteria are confined to airport literature. Life most certainly imitates art.
Urinary tract infections (UTIs) are a problem for a significant number of people with multiple sclerosis (MS). As many as three in 10 may wind up needing treatment for one. So, I was concerned when I read a New York Times article reporting that UTIs are becoming harder…
Phase 3 Trial of Ibudilast Planned for SPMS Patients with Inactive Disease, MediciNova Says Though medications are approved in the U.S. to treat primary progressive multiple sclerosis and active secondary progressive MS (SPMS), no disease-modifying treatments are approved to treat the nonactive form of SPMS. This trial aims…
OK, this was my first test. Accomplish this and Day One should be a breeze. The trick is not to panic. You’ve crossed a continent with your thumb — now all you have to do is get out of bed on your own. You manage it most days…
Have you ever read something and thought, “This is me, this is my MS”? It happened to me today as I read a post by Rachel Horne on the BartsMS blog. Horne writes about how some of us adapt to our MS diagnosis better, or at least differently, than…
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 I Manage Stress With MS” from July 10, 2018. Whether physical, psychological, or…
There is nothing worse than being diagnosed with a disorder that you know nothing about. While it was extremely difficult for me to take in, my parents also were affected. I had never thought about how my parents felt about my multiple sclerosis (MS) diagnosis and what I have…
Does your doctor consider what you’ll have to pay when prescribing your medications? A few months ago, I wrote that some people are skipping doses of their meds because they can’t afford their out-of-pocket costs. In that column, one of the suggested solutions was to talk to your doctor…
Study Examines Gadolinium Deposits in MS Patients’ Brains, But Still Can’t Determine Relationship with Disease Severity Here’s some new information about gadodiamide, a contrast dye that is injected during some MRIs. The study confirms that gadolinium, the substance on which gadodiamide is based, builds up in the brain, but…
The Consortium of Multiple Sclerosis Centers (CMSC), working with the Foundation of the CMSC (FCMSC) and EMD Serono, launched a new Mental Health Mini-Mentorship Program to help clinicians better understand the psychological and mental health challenges that people with multiple sclerosis (MS) face on a daily…
For the last two weeks or so, I’ve begun my mornings by slapping on some makeup and, with my hair in hot rollers, sitting down to read a page or two from John Updike’s last collection of verse, “Endpoint and Other Poems.” The book has several standout pieces, but…
Eight Days a Week
It was such a jam-packed week that the flavor was definitely multi-fruit! It included a meet-cute with a barber inspired by Richard Curtis (rom-com writer of “Notting Hill” and others). As no romance — or indeed, bromance — was involved, it was more of a meet-cut. I’ve…
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 forums. This week’s question is inspired by the forum topic “Do Noise and Crowds Tend to Negatively Affect You More with MS?”…
The glow of the fireworks bathes the surrounding trees. A kaleidoscope of blue, yellow, and red illuminates the night sky. It is a day of picnics, parades, and pyrotechnics. It is the Fourth of July, when Americans celebrate gaining their independence from Great Britain. I can relate to celebrating…
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…
This summer marks three years since the Multiple Sclerosis Association of America (MSAA) launched its free online forum, designed to support, inform, and uplift members of the multiple sclerosis community. The organization encourages all affected by MS to make use of this resource. Called My MSAA Community, the platform…
CBD Oil: Panacea or Placebo?
Last night in bed, my calf muscles started cramping. Again. Usually, it’s just my left leg, but last night it was both. The pain wouldn’t ease with my usual stretching routine so I reached for my little bottle of cannabidiol (CBD) oil. I’ve been experimenting with CBD oil on and…
FDA Approves Botox to Treat Upper Limb Spasticity in Children Aged 2 to 17 Botox injections have been approved to treat spasticity and bladder problems in adults with multiple sclerosis (MS) for years. It’s encouraging to see pediatric-onset MS receiving more attention and approval for medications. As MS is…
Confession: I Was a Toxic Person
I confess. I was a toxic person. A “toxic” person can possess many different characteristics — some can be more harmful than others. What do you do when you realize you have a toxic attitude? The beginning I never imagined myself becoming a…
It’s taken over a year to conceive, organize, and plan, but yesterday, I was able to leave the house on my own. I even checked that I had my house keys on me as, in theory, I could now also get in on my own. This is not strictly true:…
Legos, it seems, are more than just a kids’ toy. People with some neurological conditions, including multiple sclerosis (MS), are using those little, colored building blocks to build better lives for themselves. An article in the latest issue of Brain & Life uses Kathleen Jordan as one example. Jordan,…
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 Chiropractic Therapy Can Help Multiple Sclerosis Patients,” from June 1, 2018.
I am frequently commended for my demeanor. For my strength amid pain and adversity. For my optimism and happy disposition. For making the most of my circumstances. I love my steadfast faith. I love my fierce determination. I love my decision to combat pain and adversity with hope. I love…
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…
I’ve been living with MS for nearly 39 years and I’ve never seen the notes my neurologist has written during my office visits. My neuro did hand me a thick folder of notes several years ago. It had material dating back to my diagnosis in 1980, but when we…
Cyxone Launches Phase 1 Trial Assessing T20K for MS This trial caught my eye because even though it’s a small, early trial, T20K is a medication derived from a plant. Animal studies have shown that the treatment can inhibit cytokines, substances that mediate inflammation. Cyxone launched the first-in-human Phase…
Nearly Thwarted by a Step
Even in my able-bodied days, I was hardly Channing Tatum — who is? Model, actor, dancer, singer, and he even has the audacity to be funny. There might not be any real comic book heroes in the world, but he is possibly the closest to an X-Man we’ve got.
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