Columns

The Unplayable Piano

What do a broken-down, out-of-tune piano and multiple sclerosis have in common? Well, theyā€™re both disorderly and confusing, to say the least. But thereā€™s something else ā€” they have the potential to bring about something positive. I learned this from a podcast called “Hidden Brain,” specifically from an…

Going Mobile

In February of last year, I stopped. Walking more than a few steps was suddenly impossible. I’d fought, taken every medication and supplement possible, but I’d lost. Maybe positive thinking and mindfulness would have helped, but for me, that was a step too far! Research, organization, and…

Need to Know: What Can I Do About Tinnitus?

Editor’s note: “Need to Know” is a series inspired by common forum questions and reader comments. Have a comment or question about MS? Please visit our forum.Ā This week’s question is inspired by the forum topic “Tinnitus and MS: An Annoying Combination” from Jan. 4, 2017. What is…

Mayzent Joins the MS Medication Arsenal, But I Have Questions

As you might have heard, a disease-modifying therapy (DMT) for patients with active secondary progressive multiple sclerosis (SPMS) was approved a few days ago. That’s great news. A medication targeting SPMS is overdue, but it could be better. The DMT is Mayzent (siponimod), a tablet that’s taken…

My Reluctant Journey Toward Using Mobility Devices

When I was younger, I assumed that I wouldn’t require a mobility device until much later in my life. I wasn’t prepared for needing to use a cane or a walker in my 50s. My 2010 multiple sclerosis (MS) diagnosis rearranged my life in many ways. And having…

MS News that Caught My Eye Last Week: Reaction to SPMS DMT Approval, Ozanimod’s FDA Application, Caregiving Partnerships, a New Preventive Medication?

MS Patient Groups React Favorably to Mayzent Approval, But Question Therapyā€™s Price Tag The approval of this medication is very good news. However, as the headline indicates, it comes with a relatively hefty cost. It’s approved for active secondary progressive multiple sclerosis (SPMS), and many of us have SPMS…

Always in the Kitchen at Parties

My nephew James has taken an interest in this column since having a starring role in it a few weeks ago. We were at his mum’s 60th birthday party. He casually asked, “What are you going to write about next week?” A good question. I answered with a…

Some Thoughts About Controlling Your MS Bladder

There are two types of people with MS: Those who have bladder problems and those who will have them. That may be an oversimplification but Iā€™d be willing to bet that you, like me, have had that gotta-gotta-go problem too many times to count. Sometimes you make it…

Need to Know: What Exactly Is Cognition?

Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum. This week’s question is inspired by the forum topic “What do you do to help strengthen your cognitive abilities?” from…

Losing Fear of Change with SPMS

I am a strategist. I think things through. This attribute is borne of necessity. A birthday dinner is not complete without my exit plan. As I wait to be served, I realize the booth is a bit low. I smile, blow out my candle, then scope out things…

Remember, Remember

When I first learned that I had multiple sclerosis in late January 2004, the thing I worried about most was losing my mind. No, Iā€™m not referring to stressing out, going bananas, cracking up, going off the deep end, or coming unglued ā€” though all of those were distinct…

Singing the Bureaucracy Blues

You think getting a chronic illness is as bad as it’s going to get, but then you quickly realize that you’ve been catapulted into a netherworld. There’s no stepping through the back of the wardrobe into Narnia ā€” I’m pretty sure C. S. Lewis didn’t envisage disabled access furniture!…

Need to Know: Why Do I Have Facial Pain?

  Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum. This week’s question is inspired by the forum topicĀ “What is Trigeminal Neuralgia?” from May 2, 2018. What causes…

Intimacy and MS: A Lesson in Discovery

Living with secondary progressive multiple sclerosisĀ is a lesson in discovery. I strive to manage life with MS one day at a time. My disease touches all aspects of my life. One of the elements it affects is intimacy: closeness, affinity, warmth, trust, and mutual affection. Intimacy is friendliness,…

Dealing with Seizures and Multiple Sclerosis

When youā€™ve lived with multiple sclerosis (MS) for as long as I have, you sometimes forget or block out negative experiences youā€™ve had over the years. AsĀ The Rolling StonesĀ put it, “Time is on my side.” One particular memory seems distant, but…

DMT Choice for Your MS Is Your Decision

About 15 disease-modifying therapies (DMTs) are available to treat MS these days. So, choosing which to use can be daunting. I’ve been treated with four DMTs since I was first prescribed Avonex (interferon beta-1a) back in 1996. Each time I’ve switched treatments, my neurologist has suggested a number of…

Dealing with MS Personality and Emotional Swings

I have always found group settings to be challenging because of my shy and quiet personality. While I do fine talking to people one-on-one, gatherings of three or more can make me squirm. Years ago, the company I worked for held monthly bonding sessions for…

The Antibiotic Time Loop-the-Loop

Julian, the doorman at the London Comedy Store, is giving me his biweekly telling off about drinking. It’s biweekly because he and the other regular doorman, Mark, take turns helping me. I’ve known both of them for more than 30 years, though to be fair, in the…

Pediatric MS Can Be ā€˜Diagnostic Odyssey’

A post in one of the MS social media groups I follow recently asked whether kids can have MS. The writer was worried about her 3-year-old. One commenter replied that her son was diagnosed when he was 9. But, she wrote, his symptoms actually began to appear when he…

Need to Know: What Is Chair Yoga?

Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum. This week’s question is inspired by the forum topicĀ “Chair yoga” from April 14, 2018.

Visibly Me, Visible MS

Multiple Sclerosis Awareness Month has arrived, lasting throughout the month of March. All things orange and popular hashtags flood social media sites. Awareness months like this have great value, though some may disagree. Awareness months become vessels to engage and encourage individuals and communities to get involved.

Are MS Patients Using Too Many Medications?

Have you ever heard of the word “polypharmacy”? I saw the word for the first time today. It’s generally defined as taking many medications together. There’s been debate over how many is “many,” but a number generally used is five or more. That describes me. I take…

Sometimes You Have to Skip the Whaling Chapters

Playing Billy Beane in “Moneyball,” Brad Pitt utters the now famous line, ā€œAdapt or die.ā€ (Warning: The scene linked here has a few naughty words in it.) Heā€™s referencing the use of statistics to create a better baseball team, but I think the saying is true to most…