Columns

An MS patient who reads my column sent a personal message last week. It began: “Sorry about the secrecy. I’m in the closet! Seriously, I haven’t told many people about my RRMS diagnosis, for many reasons. I really don’t want my kids knowing. … I want to spare them that…

Now that 2016 is thankfully behind us, it’s time to start a new year — fresh, rested, and ready to kick butt and chew bubble gum. That being said, rest in peace David Bowie, Alan Rickman, Glen Frey, Prince, Nancy Reagan, George Kennedy, Gary Shandling, Anton Yelchin, Gene…

I’m already tired of hearing about New Year’s resolutions. If you’re like me, you find that for those who spend their social media time listing goals in earnest, there’s a smidgen of luxury to their actions. After all, most of these goal-making champions are not chronically ill. They don’t have to think…

Phoebe Scopes was the first international patient to receive Hematopoietic Stem Cell Transplantation (HSCT) therapy for multiple sclerosis in Moscow. In this fourth, and last, part of her story, we join Phoebe on her return home to the London. Ian: What is your post-HSCT MS state from getting home…

Long-awaited approval of the multiple sclerosis drug Ocrevus (ocrelizumab) has been delayed by the U.S. Food and Drug Administration. What had been publicized widely as a late December 2016 FDA approval hearing has now been pushed to late March 2017. The drug’s manufacturer, Genentech, issued a very…

Cookies and veggie tray in tow, and trepidation in check, I ventured to a New Year’s Eve party at a friend’s house. Since my diagnosis of MS, New Year’s Eve has been celebrated at home with Dick Clark, and then Ryan Seacrest, to keep me company. In Winter…

Loss of hearing symptoms such as tinnitus are not usually attributed to multiple sclerosis, but for those with MS who do experience tinnitus, like me, they can be very annoying. The American Tinnitus Association (ATA) describes the symptoms as: “the perception of sound when no actual external noise is present.

2017 has arrived. Welcome to a new year! First, I would like to say thanks for allowing me the opportunity to share my MS journey with you. Your comments, emails and words of encouragement are appreciated. 2016 was an eventful year, indeed. I have learned much about the disease…

  Several months ago I wrote a blog on my personal website about Ocrevus (ocrelizumab), the first drug that’s designed specifically to treat primary progressive, as well as remitting, multiple sclerosis. The clinical trials for Ocrevus posted excellent results. The buzz in the medical community was good,  and it was…

We all know the credit card commercial with actor Samuel L. Jackson talking about the buying power and the return on a certain credit card. He speaks about the bonus cash-back offers you can accrue if you just keep spending money and putting it on your credit card. The tag…

The glory days of multitasking may be fading. More and more research points to the fact that our brains actually cannot multitask. Rather, the brain shifts rapidly (it’s all relative) back and forth between tasks as we attempt to do multiple activities at once. Like many people with MS,…

When I was a child my teeth had a lot of cavities So, I had lots of fillings in my mouth. The fillings were silver amalgam, which contain about 50% mercury. Mercury is a pretty toxic metal. In fact, these days if you break a thermometer and its mercury spills…

I was thinking of writing about another subject a few days ago and then, as usual, life happened. I learned of the passing of a former colleague recently. I did not know her well, but her spirit was infectious. She had been fighting colorectal cancer for 12 years. As…

Nine months ago I started the high dose biotin protocol. I did so in an effort to slow the progression of my primary progressive multiple sclerosis. This is the link for my first article in August detailing the high dose biotin protocol and my results at that time.

Here are my Picks of the Week’s News, as published by Multiple Sclerosis News Today. Zinbryta Approved in Canada as Once-Monthly Treatment for Relapsing MS It can only be good for people with relapsing MS in Canada that they now may receive Zinbryta as a treatment.

“This first candle in the advent wreath,” I told my kids as I clicked the lighter and set its flame atop the wick, “represents hope. What does that word mean to you guys?” In the warm glow of the purple taper, we talked about everything from wishes and…

I don’t want to write about Andrew Barclay. But I have to. Because Andrew Barclay could be you or me. Barclay died in early December. He was a former civil servant in the U.K. and a grandfather. He turned 65 on his last birthday. And, Andrew Barclay had multiple…

Last week, I introduced you to Phoebe Scopes, the very first MS patient from another country to undergo hematopoietic stem cell transplantation (HSCT) in Moscow. Today, in Part 2,  we pick up the story of the 46-year-old who lives in London. Ian: So, you had done lots of research. How…

I’ve been mulling over what to write for my initial post for Multiple Sclerosis News Today. I want to make a splash, to keep you interested and let you know who I am and why I’m here. As Rogers and Hammerstein wrote in The Sound…

I’ll admit I was nervous as I sat in the infusion chair for Day 1 of Round 1 of my Lemtrada (alemtuzumab) infusions. I’d read a lot, and talked with my neurologist a lot, about the drug. I knew the benefits of Lemtrada could be great. My multiple sclerosis…

I’m sure all of us with multiple sclerosis have had at least one magnetic resonance imaging (MRI) scan. Most likely, more than one. MRIs are designed to scan and provide detailed pictures of the body, the brain included. The test can reveal scars (plaque lesions) on the brain and the…

Here’s my Pick of the Week’s News, as published by Multiple Sclerosis News Today. Imbalances in Brain Microbiota May Be Behind Demyelination in MS, Study Says Good to see that new research involving humans (NOT mice this time) may lead to better understanding of MS. Alterations…

Have you ever wondered how your MS experience compares with others? Your ability to go out and do things? The therapies you’ve used? Your symptoms? Your age and ethnic background? Researchers from the Accelerated Cure Project for Multiple Sclerosis have been collecting this kind information for nearly two years…

I had the pleasure of being invited to speak and share my story at an event this week. Although I speak often, each encounter leaves me in awe. I am continuously reminded of the numbers of people with whom my story resonates. I also am cognizant of the lasting…

I make no secret that I believe MS nurse practitioners (NP) are the people who make the difference in an MS clinic. They are as knowledgeable as most neurologists when it comes to treating multiple sclerosis and usually can see their patients without the time constraints that doctors face.

Our daylight hours continue to get shorter, as we get closer and closer to the winter solstice. At 4:15 p.m. I close the curtains and blinds, uncomfortable sitting on display in my living room as I continue to work until 5:30 most evenings. It’s difficult to motivate myself to leave…

Here we go. This is the week my Lemtrada (alemtuzumab) infusions begin. A few weeks ago I wrote about how Lemtrada has been successful in stopping disease progression in folks with relapsing-remitting multiple sclerosis, and those who have transitioned to secondary progressive MS but continue to have relapses. There have…

There are very few days left this year. But in order for the amendments to the ABLE Act not to die in committee, they need to be brought to the floor for a vote. (If you need a refresher on the ABLE Act and pending amendments, I wrote about them in…

Those of us with “invisible illnesses” are no strangers to this subject. Most of us have experienced situations in which we were judged, insulted and scorned based on people’s opinions and perceptions. We are told that we don’t look sick and we are placed in situations where we feel…

Keeping motivated is a daily struggle, and honestly, most days I just don’t feel like moving. I feel better once I do, of course, but the motivation to move and be productive is lacking. Here are a few tips that I find helpful to help keep me motivated and…