Order Seen in Motor Skills Affected by MS, With Walking Taking First Hit Read this headline carefully. It reports that walking takes the “first hit,” but that doesn’t mean it’s the first MS symptom people experience. My first symptoms involved vision, fatigue, and hand strength. But true to the…
Columns
The Mouth That Roared and Roared
Strap in: This is not going to be a fun one. Even less so for me — though I’m writing this under the sort of drug load that Jack Kerouac and Hunter S. Thompson would have been proud of! Not for fun (or dependence!) but for survival. “Since TN is…
Like others these days, I’m worried about COVID-19. In fact, I’m probably more worried than some. I’m old, I have MS, and I’ve been treated with the disease-modifying therapy Lemtrada (alemtuzumab) — a trifecta of potential trouble. Lemtrada suppresses part of the immune system. It’s one of the…
A Dog’s Love in a World of MS
I am staring at my golden retriever, Abby, as she sleeps on the lawn, the afternoon sun dancing through her fur. Lying so still, she is encapsulated in a golden glow. I glance at her chest and am reassured by its rhythmic rise and fall. Abby is 10, and…
Rose petal confetti — made from the roses my dad had given me a few days before — rained down as the people I cared about most in the world cheered. “Congratulations!” came from all around as family and friends pulled me in for a hug. My legs,…
MS News That Caught My Eye Last Week: Ketamine, Arbaclofen ER, Bafiertam, UK Health Services
Ketamine May Help Treat MS-related Fatigue, Small Pilot Trial Suggests I’m tired — I mean really bushed. Today, despite my daily dose of modafinil, I have to sit and think, “What was I starting to do?” before doing it. (I had to look at a list on my phone…
For an espoused leftie, you might be surprised that I’ve always had the brush of the rugged individualist about me. Not quite Bear Grylls, but grabbing a rucksack and hitching across Canada still counts as my own youthful rite of passage. I was used to doing everything! As…
Do you ever wake up in the middle of the night thinking strange thoughts about your MS and your dog? I did the other night. I’ve written about Joey, my cocker spaniel, a couple of times. For example, there was a column about the adventure of taking him for…
Putting Myself First
“Take the time you need,” “This too shall pass,” and “You can’t pour from an empty cup” are just a few idioms I have used to encourage others. Strong shoulders carry heavy loads. My shoulders bear the weight of myself and countless others. The DNA of an empath is…
‘You Look OK to Me’
“You look OK to me.” He stood, towering over me, his big belly billowing from his shirt as he straightened up and lifted his chin, glaring down at me over folded arms. I swallowed. Anxiety rushed through me. What am I going to do? I was desperate…
MSAA Opens ‘COVID-19 and MS Pathfinder’ Online Informative Platform Information about MS and COVID-19 is dynamic and regularly changing. This has been particularly true about how to handle disease-modifying therapies (DMTs). The website mentioned in this story tries to keep up with these changes while covering multiple subjects ranging…
What Will We Do?
I recently started writer David Sedaris’ MasterClass, and one piece of advice he keeps reiterating is the importance of keeping a diary, a daily record of your doings and dealings in this world. It’s a habit I’ve fallen out of, so I bought a stack of Moleskine cahier journals…
In the U.K., stand-up comedy is currently dead. Like Python’s parrot, it “wouldn’t move if you put 4,000 volts through it!” That’s not strictly true. Our government has just stumped up 1.57 billion pounds ($1.97 billion) to support the arts that were slammed shut by the crisis. Comedy is…
I’d just gotten out of bed the other morning and was headed to the bathroom using just one cane when I tried to step over a dog toy on the floor. I went down slowly onto the carpet, so it was really no big deal. No harm, no foul, but…
Accepting a New Diagnosis
I have long preached the merits of acceptance. In embracing my MS, I have mitigated much of the accompanying fear. This modus operandi has enabled me to live alongside my disease as opposed to clashing with it. While ideal, it is becoming increasingly difficult to follow my advice. Two…
I saw this question asked in a group somewhere not long ago and it got me thinking. Would I go back to the way I was before my multiple sclerosis diagnosis? No, I wouldn’t. That may sound strange, I…
MS News That Caught My Eye Last Week: Epstein-Barr Link, Cannabis Study, Relapses and Disability
B-Cells Infected by Epstein-Barr Virus Linked to MS Relapse Risk in Study I usually steer clear of mouse studies. Mice lie and monkeys exaggerate, some researchers say. But this is another piece to add to the growing pile of evidence that there’s a great big link between multiple sclerosis…
In this case, the woman in question was yet again my wife, Jane. The hour in question was 4 p.m. on my usual day of writing. But on this day, writing had to be forgotten until a stint later at night (yawn). I had an entertainment Zoom call to partake…
July is Disability Pride Month. Now, don’t slam me right away for writing this, but I don’t think we need a month highlighting disability pride — just like I don’t think we need a month in October spotlighting that we have rare diseases, especially because to me, multiple sclerosis…
Yup, it’s the annual whinge about what heat does to most of us, this time livened up by a headline that includes two Beatles’ song titles. (Yes, I did have to scroll through their discography to find the deeply submerged second — a George Harrison number off “Yellow…
PROTXX, University of Alberta Collaborate to Develop Remote Healthcare Platform for MS Patients As more and more neurologists turn to telemedicine for routine patient visits, I expect we’ll see more of the type of technology being developed here. This group is working on something that goes further than what…
Our thoughts influence our being. The stories we tell ourselves frame our reality. They affect the decisions we make, our behaviors, and ultimately our overall mindset. These serve to either nourish or starve our psyche. If we are what we eat, then are we what we think? Absolutely. We cannot…
Note: This column was updated July 23, 2020, to remove erroneous information about red blood cells. We regret the error. When I was newly diagnosed seven years ago, one of the hardest things to deal with was the idea of having…
MS News That Caught My Eye Last Week: Mayzent, Hookworm Therapy, Walking and Falling, ADS-5102
NICE Does Not Favor Adding Mayzent to NHS England for Active SPMS Currently, the only disease-modifying therapy approved for use in the National Health Service is Betaferon (interferon beta-1b). That’s a 20-year-old treatment considered to be one of the least effective of the DMTs. NICE concedes that clinical trials…
Last Wednesday my days of rest suddenly smashed to a halt. At one point it seemed like the majority of those who work for my local council’s social services (whom I should have also thanked for their immense help over the last few weeks, mea culpa) were squeezed into…
It’s been a few weeks since I’ve written about the impact that COVID-19 is having on people with MS. Since then, the picture has changed — not a lot, but enough for the MS International Federation to modify its recommendations for that illness, people with MS, and…
Over the years, I have observed how others deal with multiple sclerosis and its symptoms. This disorder is not one-size-fits-all, and it doesn’t discriminate. Recently, I came across a video of ABC News interviewing actress Selma Blair about her multiple sclerosis diagnosis and management. Although the interview happened over…
I’m a fraud. Or at least I feel like one. When writing for a site about multiple sclerosis and setting up a business focused on my diagnosis to help others in the same boat, it is a requirement that I…
MS News That Caught My Eye Last Week: Gilenya and COVID-19, Depression, Switching from Tysabri
Gilenya May Help Control Severe Respiratory Disease in COVID-19 This story caught my eye, but not because of the possibility that Gilenya may help someone recover from COVID-19. It caught my eye because this information may give false hope to some people. Some doctors think that at a…
Beach, Please!
My family just returned from a lovely week-long vacation on the Gulf of Mexico. It’s always a wonderful time (and one perfectly suited to socially isolating) because we literally do nothing. We make no plans. We buy no tickets to any event or theme park. We sleep, read, and watch…