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Rare – adjective Not occurring very often; uncommon Unusually good or remarkable On Feb. 28, the world will celebrate international Rare Disease Day. A rare disease is one that affects fewer than 200,000 people in the U.S. Almost 7,000 rare or orphan diseases meet the criteria to be considered…

This week, I went to Tokyo, saw elephants up close in Africa, flew over New York, and watched a stage show, all in one day. How was it possible? Virtual reality (VR), of course! Being unable to play badminton in lockdown has forced…

National MS Society Urges DMT Dosing Changes for COVID-19 Vaccinations The National MS Society has revised its COVID-19 vaccine recommendations first issued about a month ago. The guidelines still say the Moderna and Pfizer vaccines are considered safe for people with MS, including those using disease-modifying therapies, or DMTs.

I was 6 years old when British boxer Henry Cooper knocked Cassius Clay on his bottom. (It was that long ago, folks — 1963. This was before Clay’s religious conversion and consequent name change to Muhammad Ali.) Unfortunately, Clay was literally saved by the bell. I remember dashing around…

It’s a good thing my wife, Laura, is persistent. Thanks to her tenacity, we’ve both been able to get our first shots of the Moderna COVID-19 vaccine. According to the pharmacist who gave us our shots, in two weeks we should be about 60% protected from the SARS-CoV-2 virus…

Bravado is lost in the blink of an eye. Self-doubt erodes certitude until we find that our default modus operandi is to refuse. Opportunities, happiness, possibilities, and growth seem to pass. This no-risk mentality brings no reward. Chronic illness is a breeding ground for skepticism. We live in a world…

“Open Circle Chat!”  Have you seen the reality TV series “The Circle”? It was first shown in the U.K. on Channel 4, and there’s now a U.S. version on Netflix. It is well worth a watch.  I started watching it because of the psychological…

FDA Approves Plegridy as Intramuscular Injection for Relapsing MS A common patient complaint about Plegridy has been that its subcutaneous injection procedure results in injection site reactions. This new formulation is delivered into the muscle, rather than under the skin. The needle is longer, but Biogen pharmaceuticals thinks the…

I know quite a few of you are dealing with copious amounts of snow right now, but there is not a speck of white stuff on the ground where I live in Atlanta. And for that, I am grateful. Why? Because I do not like snow. I do not like…

Would I jinx it? In last week’s column “How I’m Staying on Top of MS’ Many ‘Gifts,'” I wrote about being on top of all my MS-induced ancillary symptoms. Wendy, one of my two readers, pointed out that she didn’t want to jinx me. The trouble was that I’d…

My left hand was numb and weak when I was first diagnosed with multiple sclerosis. For years after that, symptoms above my waist seemed just as prevalent as those below it. Yet, there were no tests being used that measured my waist-up disability level — nothing equivalent to the…

I am confident. I am amazing. I am enough.  Don’t worry, I’m not getting big-headed. I say these statements to myself every day. Why? It’s part of a routine I started a few years ago, and it’s safe to say…

Tecfidera Safe and Effective Over Long Term in Children With RRMS, Trial Shows In my view, too little attention has been paid to treating children and teens with MS between the ages of 10 and 18. Though things seem to be improving, only one disease-modifying therapy, Novartis’ Gilenya (fingolimod),…

When I was finally diagnosed with multiple sclerosis in 2009, my first question to my neurologist was, “Will I end up in a wheelchair?” She patted this question back with the generic, “You may, but no one knows the course that anyone’s MS might take.” Later, I learned that late-onset…

A medical website’s headline screamed, “Breakthrough Multiple Sclerosis Vaccine Shows Impressive Results In Study.” The New York Daily News joined in, highlighting a potential “breakthrough” vaccine. Other media outlets also were using similar adjectives earlier this month. Unfortunately, it’s normal media hype. I suspect some of it was was…

Optimism is kryptonite to the fear and doubt I keep inside. I am grateful for my cheerful disposition because it allows me to maintain balance. But balance is not healing. Left alone, those feelings that I fear ultimately fester. I tend to push aside sadness or frustration. I…

I have a secret. You may roll your eyes at me when you hear this one.  It’s how I juggle spending time with family and friends, running a business, and exercising while managing fatigue. If you know me, you know my secret. Or…

Clene Awaits US Patent Covering Gold Nanocrystals’ Use in Treating MS This is a different approach to MS treatment. It uses very tiny crystals to produce a chemical reaction. It is hoped that this reaction will protect neurons and help to generate myelin. So far, there have only been…

As hard as it is to believe, we’re now nearly a year into this pandemic. Thankfully, two vaccines are currently working their way through the system and into people’s arms in the U.S., and before 2021 is out, perhaps we’ll get back to something resembling normalcy (whatever that is). One…

“No Sex Please, We’re British” was a British farce that opened in London’s West End in 1971 and ran until 1987. It was panned by critics, but having “Sex” in the title sure was a winner, helping it to run for 17 years. Let’s hope some of this rubs off…

I love the car I drive, but I’ve hated going to the dealer to get my car serviced. In the four decades that I’ve lived with MS, my walking has deteriorated to the point where I use a scooter if I have to walk more than 75 feet. If I…

Almost every characteristic of multiple sclerosis differs for each of us who has the disease. While we share commonalities inherent to multiple sclerosis that make us similar to one another, much about the way our disease manifests is unique. This is why MS is sometimes referred to as the “…

Can January March? No, but April May!  OK, well, I thought it was funny.  Nothing beats the January blues like bad puns, right? Let’s face it. For most people, January sucks. The end of the year is full of excitement. There are…

Public-private Partnership Will Assess Therapy Potential, Effects of CBD Have you tried using CBD to treat your MS? I have. I’d hoped it would ease my leg spasms. Some people say it helps, but neither drops under my tongue nor salve rubbed onto my legs seemed to help me.

Unfortunately, mine didn’t involve a cool motorbike — it was the wrong kind, as somehow Steve McQueen had managed to steal a British one — and an impossible jump at barbed wire to get into Switzerland! I’ll now never be able to get onto a motorbike anyway. Instead, it…

The advice issued Tuesday by the U.S.-based National Multiple Sclerosis Society about COVID-19 vaccination couldn’t be clearer: “Get your vaccine as soon as it is available to you.” New MS Society guidelines say that the two COVID-19 vaccines currently available in the U.S., both of which use an mRNA…

“Ooh, I found some of your artwork in the loft. Did you still want it?” My mum’s beautiful, melodic voice sang through the phone during our regular chat.  “Heck yes! Can I pick it up tomorrow?” I replied. I didn’t know what had happened…

Study: Past Long-term DMT Use Tapers Risk of Current MS Progression Since being diagnosed in 1980, I’ve used four disease-modifying therapies (DMTs), starting with Avonex (interferon beta-1a) in the late 1990s. I haven’t had a true flare since shortly after my Avonex treatment began. My disease has progressed, but…

The holidays can be difficult for many reasons, but one of the things I struggle with is the breakdown of routines. The kids are home from school and spend way too much time directionless, their faces glued to one screen or another. Work slows down or stops entirely as…

Now I know what it is like to write like Jack Kerouac and Hunter S. Thompson. Not because I have their talent (if only), but due to the inescapable fact that I’m so high that the children’s Christmas kites flapping in the park are far below me! Oh, it turns…