Columns

Erythromelalgia is a rare and painful multiple sclerosis (MS) symptom that I (and others with MS) experience. Almost every night my feet have a tight, swollen feeling accompanied by a terribly hot, burning sensation. It is usually cool to the touch but can feel hot at certain…

A few weeks ago, I wrote about some of the invisible costs of living with MS. Writing that column really got my mind thinking about all the ways that my MS costs me money. In fact, I couldn’t stop thinking about it! In the days that followed, I…

Like so many people with MS, Mariska Breland remembers the disease’s onset as a combination of strange, seemingly disparate maladies that included tingling in her left thigh, numb feet, skin that felt “too thick” around her toes, foot drop, and double vision. One left her…

The casual remark, “You seem perfectly fine to me!” bothers me (and others) because eligibility for Social Security Disability benefits requires proving we are not fine. In fact, we must prove that we are disabled, which is no small burden when we “seem perfectly fine.” ‘Looking’ disabled An acquaintance of mine…

Someone asked me to fully explain the title of my column, “Patiently Awakened.” My column title provides a brief description of what it means to me and my intentions for readers. I thought it would be best to elaborate in the column itself. Patient as a noun refers…

Relapse after First Lemtrada Course No Indication of Poor Long-Term Outcome, Study Finds Some MS patients being treated with Lemtrada report new exacerbation after they complete round one of the drug, and they wonder if this means the drug isn’t working.

Grief is something that we have all experienced. The process is a natural human response to tragedy and loss. It is often cyclical and traumatic. I have read and written various articles referencing the grief process. Discussions with my niece and my dear friend led me to write…

The latest drug media storm to erupt in Britain is “Spice,” which causes users to become living statues. Exactly a year ago, I became a living statue for six weeks, and not one reporter hassled me. That would have broken the monotony! We all have our own version…

I’ve just been reminded, as someone with multiple sclerosis, how fortunate I am to have good medical insurance. Unlike most other countries, where medical care is a right, in the U.S. that care is a privilege. Here the quality of care and too often the availability of that…

One of the biggest ongoing threads we have in the forum I help admin revolves around the subject of pain. We all know how pain can be disabling, or if not disabling, still influential over our moods, our ability to sleep, our energy levels,…

The past year has taken its toll on my digestive system. I’ve experienced alarming amounts of pain, bloating, diarrhea, and more fatigue than I normally experience from MS. All of these issues caused great stress both emotionally and physically, so it was no surprise when my…

A smartphone app has been designed to collect lots of information related to your multiple sclerosis – things such as physical and cognitive test results, MRI images, and even genetic data. The hope is that via the app researchers will be able to collect a lot of patient data…

My walk in the park usually consists of watching every one of my steps, while conserving my energy so I can finish the trek. In the midst of my walk, I remain acutely aware of how weak my legs are, and hope they don’t give out on me. For…

In case you missed them, here are some news stories that appeared in MS News Today that caught my eye over the past week. Ocrevus Market Entry Already Changing Dynamics in MS Treatment Choices, Spherix Analysis Suggests   Are pills, shots, or infusions the therapy…

Those of us with multiple sclerosis know how difficult it is to describe our journey. Words frequently are inadequate for that task. But, at Derby College in England, horticulture students and their instructors have found a way. They’ve teamed up with local MS Society branches to create a 30-foot-by-40-foot garden…

How well do you bounce back when MS gets you down? An article called “Bouncing back again, and again: a qualitative study of resilience in people with multiple sclerosis” caught my attention because bouncing back is something I don’t do as well these days. I believe resilience means to be…

Many people with MS experience symptoms related to digestion. According to the Pittsburgh Institute for MS Care and Research, “Nearly two-thirds of MS patients have at least one GI symptom that persists for 6 months or more.” Some of the most common problems are dysphagia (trouble swallowing), heartburn, nausea,…

With summer right around the corner, it’s time to start making plans. We all love spending time outdoors during the long hours of sunshine and warm temperatures, don’t we? Well, not everyone does. If you’re reading this, you’re probably living with multiple sclerosis. That…

What makes housing accessible? I thought I knew all of the features that would make a dwelling accessible. Turns out I didn’t. The Department of Housing and Urban Development report on housing stock in America has a table that covers an extensive range of…

A couple of weeks ago I wrote a column regarding end-of-life decisions. The reality is that the time will come for every human being. This journey of life and chronic illness continues to teach me salient lessons. I have been asked numerous times if I am afraid…

It’s the time of year for travel here in the U.S. Graduations, weddings and vacations are on all of our calendars. Air travel, in particular, can be a real pain for someone with a handicap such as multiple sclerosis. Security, aircraft seats and legroom are all becoming increasingly…

Fear of the future will likely rear its ugly head more often than you’d like when you have multiple sclerosis or any serious chronic disease. It can be difficult to keep your mind from wandering to a very dark place. Worries about how fast your disease is progressing,…

In case you missed them, here are some news stories that appeared in MS News Today that caught my eye over the past week. MSAA’s Dr. Jack Burks Responds to Readers’ Questions About Ocrevus and Its Use All over the internet MS patients are asking questions about…

Pull up a chair, kiddos, and I’ll tell you a sad story. Because we’re both musicians, my husband and I love going to concerts together. We’re on a budget, so we have to be choosy about who we see and where we sit. However, there is a short…

If I was writing fiction about two disabled people going on a road trip, I’d be pleased to create a character like Nigel. He’s stroppy, Northern (from the perspective of the U.K. there isn’t a direct U.S. analogy – think deep south– but really cold and more booze!)…

I’ve been taking a statin drug for years to keep my cholesterol low, and it’s doing a really good job. Now, there’s hope that this class of drug also might be useful for MS patients. A major trial in the U.K. is testing the drug simvastatin (used to control…

“Coping with Caregiver Burnout When Caring for A Person with Neurodegenerative Disease: A Guide for Caregivers,” published in the April 2017 issue of the Archives for Physical Medicine and Rehabilitation, is intended to give better insight into caregiver burnout, and what might be…

(Editor’s note: Tamara Sellman continues her occasional series on the MS alphabet with this first of two parts on terms starting with the letter “D.”) When it comes to multiple sclerosis, mastering an understanding of the disease means you need to mind your Ps and…

MS is sneaky. It is expert at evading detection and diagnosis, and often brings a host of invisible symptoms that may come and go at random. MS also brings invisible costs — expenses beyond the obvious medications, supplements, assistive devices, and healthcare. I am not talking about externalities,…

I am well aware of the importance of a mother, or a mother figure, and the significant role she has in the lives of her children and community. I am blessed to have an awesome mother who has profoundly shaped my life. It is her love, guidance, patience…