Columns

Be My Wife

Let me introduce you to my wife, Jane, by cheekily lifting the title “Be My Wife” from possibly the only accessible track off Bowie’s seminal ’70s album, “Low.” Through these weekly columns I’ve mentioned her often enough, but I’ve never formally introduced her. Mea culpa. I didn’t have…

Do Online Medical Records Make You Worry?

A few weeks ago I warned of the dangers that are possible when people turn to social media for information about their MS. But there’s another danger that technology and the internet have brought us: access to our own medical records. Sandra G. Boodman has taken…

Doctor Connections

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…

2 Great Things that Go Great Together: Calcium and Magnesium

While Reese’s Peanut Butter Cups are the true “two great things that go great together,” calcium and magnesium take first place for those with MS. Many proponents of special diets for MS encourage the consumption of foods high in this mineral dynamic duo (along with other vitamins needed for…

Shining Through Boundaries

I spent the majority of my life as a people pleaser. From the time I was young, I equivocated “yes” with likability; please and be pleased. As the years passed, compromising my own needs became second to meeting those of others. While I genuinely enjoy…

Here’s How to Honor the First #ProgressiveMSDay

We’re all familiar with the yearly observance of MS Awareness Week and MS Awareness Month to raise awareness about multiple sclerosis. Considering that so many rare diseases, such as Graves’ disease or Ehlers-Danlos syndromes, go largely unnoticed, the MS community is blessed with its fair…

Moving Forward After MS Awareness Month

We are approaching the conclusion of National Multiple Sclerosis Awareness Month, but those of us with MS know that the responsibility to educate is unending. I was pondering what my topic would be this week. As awareness month exits, I want to proffer an encouraging message. This…

Is MS Keeping Me from Smelling the Roses?

For years, my wife and I have disagreed about smells. She smells something and I don’t. I tell her that her nose is too sensitive. She tells me to get out the air freshener. Over the 37 years since my MS diagnosis, this conversation has happened thousands of times.

My Unique Primary Progressive MS Diagnosis

I have lived with the diagnosis of primary progressive multiple sclerosis (PPMS) for almost eight years. For many years prior to that diagnosis, I was confused by what could be causing my abnormal gait, extreme fatigue, blurred vision, and trouble concentrating. During that time, I completed many diagnostic tests, dealt…

Keep Taking the Steroids!

Six months ago, I was a reasonably svelte 14 and a half stone. I’m not sure how I managed it, but it was certainly before pitting edema wrapped itself around my shins and calves like bulbous sacks of wineskins. I managed to get on the scales a while…

It Shouldn’t Be This Hard to Get Our MS Medications

I got a phone call from my MS One to One nurse, Lynn, today. One to One is the patient support service provided by Sanofi Genzyme for patients on the biotech company’s MS disease-modifying therapies (DMTs) Lemtrada (alemtuzumab) and Aubagio (teriflunomide). Lynn called to ensure that all…

Navigating Ups and Downs with MS

Today, I ate a dog treat. I was eating cookies from a nearby bowl when I broke a dog treat in half for Abby. Instead of putting the other half in my pocket, I put it in my mouth and chewed. Wondering how the brand could screw up so…

Modafinil or Amantadine: Who Decides?

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…

Teach Your Children Well

As an advocate for the multiple sclerosis community, people often ask me what it’s like being a mother while living with MS. My quick response is, “Joyous!” But I understand the questioner is looking for something more. They want to know how to…

‘I’m Tired’ Does Not Mean ‘I Quit’

I made an unexpected appearance at the emergency room this week, which culminated in a short hospital stay. I have been ailing for weeks, making the conscious choice to live each day as best I can. Managing pain and combating emotions and illness in everyday life is difficult, as…

Just Do It

Mary Schmich, a columnist for the Chicago Tribune, wrote a 1997 essay aimed at graduates. In it, she shared many practical nuggets of wisdom such as “Floss,” and thoughts like, “Don’t waste your time on jealousy. Sometimes you’re ahead, sometimes you’re behind. The race is long and, in the…

Into the Woods

Well, I’m usually fairly upbeat, but this time, it’s going to be beyond me. We’ve all had relapses — I think I’m in the fitting cliché of being on my last legs. I can, on a good day, transfer on my own from the bed to my trusty…

Earworms and Multiple Sclerosis

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.