Columns

Support is a crucial component in fighting chronic illness and adversity. Our humanity connects us and we thrive on relationships. Support may come in the form of family, friends, social services, groups and countless other methods. I have been fortunate to have an abundance of support for which…

Those of us with multiple sclerosis are always on the alert for new treatments. So, when a common, inexpensive and easy-to-administer drug recently appeared on the radar as a possible MS treatment, it wasn’t surprising that dozens of social media folks jumped to relay word of it. Their…

I am making the transition from multiple sclerosis patient to cancer caregiver. On May 11 my family’s world turned upside down when my husband of 41 years was diagnosed with advanced  pancreatic cancer. My caring husband, who has always loved and protected me, is now the one in…

Multiple sclerosis has a way of messing with one’s head. Whether it’s emotional or psychiatric disorders, fatigue, brain fog, or physical problems, there’s a lot to wrestle with. And to effectively battle this disease requires you to be in a certain state of mind. Let me give…

Read John Connor’s previous column, “Lemtrada I: This Island Couch.” Apologies for the pic of my edema–riddled right foot. If I put whiskers on it, my big toe could do a damn fine impersonation of a seal. On the bright side, a month ago it was twice this…

(Photo by Andreea Antonovici) A few months ago, I wrote about a bicycle that mimics the symptoms of multiple sclerosis. Now, I’ve discovered that there’s an “MS House” that allows a healthy person to experience some of what life is like for someone who lives with MS.

I couldn’t help but smile when I saw “MS Comprehensive Care: A Team Sport“ listed as the title of the John F. Kurtzke Memorial Lecture at the opening of the Consortium of MS Centers 2017 Annual Meeting. Kurtzke, according to the program, was a strong advocate of the…

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…

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…

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…

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…

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…