“Change is the only constant in life,” a quote paraphrased from Greek philosopher Heraclitus states. This ancient wisdom still prevails today. Life is in a constant flux. We evolve, we grow, and we shift, and we are never the same. When I suffer, I cling to this knowledge. And…
Columns
This year, I’ve been acutely aware that my body isn’t perfect. Sometimes it doesn’t move well. Sometimes it cuts off sensation in my limbs without notice. Sometimes it gets wiped out from fatigue. Sometimes it’s like MS shakes up my head so hard, like a can of soda, that I…
MS News That Caught My Eye Last Week: Mavenclad, Genetic Risk, Fatigue Impact, Multivitamins
Skin Reactions ‘Frequent’ With Mavenclad, Real-world Study Finds I regularly see people posting on social media about having a rash or itchy skin, or losing hair while taking Mavenclad. Researchers in this study say these side effects aren’t mentioned in the risk management plans for this disease-modifying therapy. Therefore,…
On July 10, I did something I never thought I’d do: I got a tattoo! I’ve always been fascinated by body art, and any time I see someone with ink I admire, I always ask a ton of questions about it. Sure, I ask how much time it took and…
‘He’s Fallen in the Water!’
Any British comedy aficionados among you will know “He’s fallen in the water” is the most famous of all the innumerable catchphrases of “The Goon Show.” That show was the root of Monty Python and every bit of the new wave of comedy that swept through our country.
“Do you need help?” The question came from a 30-something woman after I’d finished loading some cartons into the back of my SUV. I automatically replied, “No thanks, all done.” But lifting and loading isn’t an easy job for me. My upper body strength is good, but my legs are…
Are You Prepared for a Fall?
I sit amid the flood of carpet stain remover. My left leg is elongated as my right leg is at a jackknife. The cool of the fluid penetrates my sweats. Shock dissipates into pain. I try to move, but pain sears down toward my tailbone. I sit in the dark…
I have a weird secret. I’m sure it’s not the norm for someone with a chronic illness to enjoy this as much as I do, but it always occupies my free time: I love medical dramas. They leave me enthralled with their technical and medical jargon, and their portrayal of…
Biogen Strikes Deal for Orelabrutinib, Now in Phase 2 Trial BTK inhibitors, such as orelabrutinib, are designed to selectively block the activity of an enzyme important for the activation of B-cells and microglia. Some of those cells drive the abnormal immune responses that attack the central nervous systems of…
“Look on the bright side.” Someone just said this to me days ago regarding the loss of a very dear friend. The bright side? I demanded to know what the bright side of this situation could be. There was no satiable explanation given in that moment. I am also…
Down and Out in London Town
Last month, my brother-in-law finally managed to return to Thailand and his lovely wife. He’d been trapped in the U.K. for over a year due to COVID-19. Thailand has quite rightly imposed a Kafkaesque set of rules about entering the country on an extended immigrant visa. Luckily, we had…
People with MS who are using cannabis take heed: A research letter published in May in JAMA Network Open reports that calls to poison control centers about people intentionally or inadvertently using plant-based or processed cannabis products have been increasing over the past several years. Public health officials are…
I feared becoming disabled more than I feared multiple sclerosis. At the time of my diagnosis, I was moving about well enough. My mobility changed as my disease progressed. My severe foot drop, unsteady gait, and change in speech were impossible to ignore. My prejudice toward the disabled was…
My obsession with numbers has continued since my latest MS relapses, but now I’ve taken it to a whole new level. A few months ago, I explained in a column that my husband had filled our house with clocks after reading “Atomic Habits” by James Clear, which…
Sativex Eased MS Spasticity as an Add-on Therapy A reader in Belgium told me he has used Sativex for a couple months. He reported no dramatic improvements in his symptoms, but he said the spasticity in his right leg decreased, and he was in a much better mood to…
For the last year and a half, my husband and I had been following the high-fat, low-carb ketogenic diet with some success. I lost 25 pounds, and my spouse (as is often the way with men) lost double that. However, a few months ago, I noticed that I was…
Last year, winter never quite arrived, and spring kept springing up before being crushed down again. We imperceptibly melded into summer. Then the autumn leaves hung on, and hung on some more. But these days, would Mr. Sinatra have to get his lyricist to do a rewrite? Some of…
My grandson, John, turned 5 in May, and my granddaughter, Hayden, turned 7 in June. I love being their Poppy, but I wish their Poppy didn’t have MS. I was diagnosed with MS in 1980, just over a year after our son, Geoff, was born. He and our grandkids have…
Confusing people is my special skill. I’ll open my mouth, and no one will have a clue what I’m on about. It all started with a diagnosis of multiple sclerosis eight years ago. Since then, I’ll often get, “MS? Oh my sister’s friend’s aunt’s nephew’s dog has that!” (Just kidding.)…
Right, I actually have to start writing my column early this week because of the football schedule. For you Americans, that’s soccer, y’all. The biggest, most popular game in the world! The UEFA European Football Championship, or the Euros, is on. It’s the 2020 competition, but it’s being held…
Could a cannabis spray be just what the doctor ordered to treat our MS symptoms? I’m talking about Sativex (nabiximols), which has been developed as a treatment for moderate and severe MS spasticity. Sativex combines THC, the chef intoxicant in marijuana, with CBD, marijuana’s nonpsychoactive component. It’s sprayed…
A numb, weak leg. Yay. Another thing to add to the list of crappy challenges I’ve had to face this year. If you ask me, it’s all been a bit too much, and I’d like to get off this ride and get my money back, please. I recently rang my…
MIND Diet May Protect Brain Tissue in MS The Mediterranean Diet is one of several diets that proponents believe slow their MS progression and in some cases help to improve some symptoms. However, the National Multiple Sclerosis Society says that “evidence of effectiveness [of any MS diet] is…
Many of you will remember doing jankers (detention) in school. Well, those of you who easily identified with “The Breakfast Club” will. If you never did one, let me educate you! A teacher’s favorite devilish ruse was telling us to write about being in an enclosed white space.
In the four decades I’ve lived with MS, I’d never before experienced a serious case of vertigo. I’ve occasionally felt a little spacey. In fact, mild dizziness while traveling home from a business convention is one of the things that led to my MS diagnosis in 1980. But vertigo is…
Before turning away, I made sure to compliment my kind eyes. The green of the hazel in my eyes danced in the sunlight. The lines at the outer edges of my eyes tightened as I smiled. The crow’s-feet are an indelible reminder of the abundance of joy in my…
“Sorry, the brakes are terrible!” my husband complained, grabbing the wheelchair’s handles as I slowly started rolling down the hill. He jammed his foot in front of the wheel in a desperate attempt to get the chair to stay in place. We recently got away for the weekend to Blackpool…
Scientists Discover Enzyme Needed for Activating Myelin Repair Here’s encouraging news for those interested in remyelination — and who isn’t interested in repairing our frayed MS nerves? Yes, it’s only a mouse study, but maybe it’s the starting point for finding a way to use a particular enzyme to…
You Don’t Always Need to Fix It
I don’t know if you’ve noticed, but most people don’t like a problem without a solution. If something isn’t working correctly, they’d rather fix, alter, or throw it out and start all over than live with “wrongness.” Now, that’s great when it involves garage door openers, burnt-out lightbulbs, or shoddy…
Many years ago I thrust myself into the Edinburgh International Festival. For the many who have never heard of it: It’s the largest arts festival in the world, encompassing theater, mime, dance, comedy, film, books, and sometimes even a splash of opera. For some reason I even sat through…