Columns

A Message of Hope from a Firefly

While growing up, I loved seeing fireflies (or lightning bugs, as I called them) at night. My friends and I would chase them, trying to grasp one. There was something about the light and their ability to shine in the blanket of darkness that engulfed us. We felt…

Lemtrada Round 2: My Drip Stops Here

As you read this, I likely will be in the middle of, or finished with, my second round of Lemtrada (alemtuzumab). Hopefully, this will be the final round of this disease-modifying therapy (DMT), and the final MS treatment of any kind, for me. Though some have required more,…

Taking My MS on a Road Trip

OnĀ Good Friday, my family and I took a three-day road trip to lay my husband to rest. Our goal was to honor his last wishes and set his ashes free in the wilderness that he so loved. My husband enjoyed going archery hunting almost every fall, until a…

You Only Think You Know

When I tell people I have multiple sclerosis, I usually get one of three responses: ā€¢ “Oh, no! I feel so bad for you!” (Pity) ā€¢ “Is that the one with the telethon?” (Confusion) ā€¢ “I know all about that disease! My sister-in-lawā€™s cousinā€™s college roommate has…

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,Ā 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 Reeseā€™s Peanut Butter Cups are the true ā€œtwo great things that go great together,ā€ 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

Weā€™re all familiar with the yearly observance of MS Awareness Week and MS Awareness Month to raise awareness about multipleĀ sclerosis. Considering that so many rare diseases, such asĀ 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,Ā 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)Ā 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,Ā 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 edemaĀ 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 itā€™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…