Columns

After Standing Still, Finding My Next Step

ā€œThe carousel never stops turning.ā€ ā€“ the TV drama “Greyā€™s Anatomy” At the 2019 European Patients’ Forum Congress in Brussels, which focused on patient involvement in healthcare, attendees were invited to write down a list of goals they wished to achieve in the next 12 months. After rolling my…

Hunt for EBV Vaccine Gets a Boost From NIH

The National Institutes of Health (NIH) is joining the search for a vaccine to attack the Epstein-Barr virus (EBV). This is a big deal for people with multiple sclerosis, because carrying the virus is thought to play a significant role in the development of MS. In fact,…

We Have to Make the Effort to Care

Living with multiple sclerosis (MS) is hard. I know this is hardly a revelation, especially to those of us who struggle with it on the daily, but I felt like it needed to be said. I was scanning through articles on this site recently, seeing what my fellow…

Remembering My First MS Symptom

What was your first MS symptom? Mine ā€” the one that made me realize something was really wrong ā€” was my inability to squeeze the toothpaste tube with my left hand one morning. Of course, there were earlier hints of trouble. I was unusually tired while attending a business…

An Interview With Writer Edith Forbes: Living With MS

Last year, I got the chance to read and review Edith Forbesā€™ medical memoir, “Tracking a Shadow.” I thought it was an encouraging and thoughtful work, so I contacted her by email for an interview to share her thoughts with readers of this column. Forbes graduated from Stanford…

The High Cost of Living With MS

I always knew that living with multiple sclerosis (MS) was super-expensive, but a new study is a real eye-opener. The study, published in the journal Neurology, puts the annual tab for MS in…

A Winning Belt Turns Into WrestleMania

It was a moment of clarity. Unfortunately, my attempt at making a bright, clear consommĆ© has for the moment turned into a muddled chowder! Even worse, it was writing this column that started it. Iā€™ve written so often in this column about using my Molift assistive device for transfers…

Pain and Positivity: My Experience With Plasmapheresis

“‘Cause I would never break your heart/ I would only rearrange/ All the other working parts will stay in place.” ā€” Biffy Clyro, a Scottish rock band If youā€™ve spent any time in a hospital, you know that it never gets completely dark. Thereā€™s always a light flickering somewhere, a…

‘Nothing Gold Can Stay,’ and Thatā€™s OK

In the South, we have a tendency to cram words together to create a single gigantic one, a kind of linguistic Pangea, if you will. The one Iā€™ve been using a lot lately is ā€œusetacould,ā€ a condensed form of the phrases ā€œI used to be able toā€ and ā€œI once…

Crossing the Lemtrada Finish Line

I’m marking a big anniversary this month. It’s been four years since I finished the second round of treatment with Lemtrada (alemtuzumab), my final disease-modifying therapy (DMT). That means that, after about 60 monthly blood draws, I’m finished being stuck. Lemtrada is usually a two-phase series of injections, with…

The Building Blocks of Becoming a Busy Bee

ā€œSerendipity. Look for something, find something else, and realize that what you’ve found is more suited to your needs than what you thought you were looking for.ā€ ā€” Lawrence Block When the world was thrown into lockdown at the dawn of COVID-19, I was already an old hand at functioning…

Old Friends, Broken Chairs, UTI Admissions, and Redemption

The week started with a bang, albeit with a hint of underlying anxiety. Friends and former work colleagues gathered during the first days of spring to chat in my sun-lathered back garden in South London. COVID-19 lateral flow tests had all been passed. Previously, weā€™d spent years working together on…