Columns

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…

Just Do It

Mary Schmich, a columnist for the Chicago Tribune, wrote a 1997 essayĀ aimed at graduates. In it, she shared many practical nuggets of wisdom such as ā€œFloss,ā€ and thoughts like, ā€œDonā€™t waste your time on jealousy. Sometimes youā€™re ahead, sometimes youā€™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 ā€” I think I’m in the fitting clichĆ© 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 ā€œearworms.ā€ Earworms are those musical phrases that get stuck in our head that we hear over and over. Itā€™s much like those worms underground that burrow and twist and turn, constantly finding new territory to inhabit.

Why I Climb Trees

In March 2003, I found myself suddenly unable to drive or even walk a straight line through the house. MS had arrived with several active lesions in my brain, including one in the brainstem, which affected my balance and speech and created significant limitations in my usual activities. One…

Living Just for Today

Last week, I wrote about the incessant emotions of MS and chronic illness. This week, I will focus on living in the present moment. Remaining on a quest to continue the depiction of real life with MS for Multiple Sclerosis Awareness Month 2018, this weekā€™s column will…

MS Can Be a Kids’ Disease, Too (Part 2)

After I wrote about pediatric MS earlier this month, a reader commented: “I think it would behoove your editorship to follow up to address to audiences…symptoms that typify the early-age demographic.” That’s a good point. So, I drilled deeper into how MS is handled in people younger than…

Out of the Woods?

It’s been a grueling three weeks. Birds ate myĀ breadcrumb trail long ago. I was too tired to follow it anyway. Stumbling about has definitely been beyond me! I’ve just shaved what had become a beard and showered, which, mixing my stories, made me feel like I’d been living on…

Getting Cash Back for Choosing Medical Services

You know about credit cards that offer you cash back for the items you buy. How about getting cash back for selecting specific healthcare service providers for things like medical tests and lab work? Go to your insurance company’s website, then enter your zip code and the service…

Emotions Run High

I am a sensitive individual by nature. Good, bad, or insignificant, that is part of my genetic makeup. I cry when the dog gets hurt in the movie, at every episode of “This Is Us,” and every time I hear “O Holy Night” at Christmas Eve services. While sometimes endearing,…

Oscar the MS Monkey and His Buddies

While at the ACTRIMS Forum 2018 (which stands for Americas Committee for Treatment and Research in MS), I was surprised to see a colorful display of orange-and-teal colored sock monkeys mixed in with the pharmaceutical company and advocacy organization displays. It was the display booth for Oscar…