It has been a busy few weeks. Well, when I think about it, every week is busy. There is always something that must be done. Just when I think things will slow down, my schedule lengthens. Admittedly, I am not a technology expert, so I rely on the…
Columns
About a year ago, I first learned about something called an Ogo. It was just in the development phase then, but it was the neatest thing I’d ever seen for getting around when your legs can’t do the job. You don’t need to use your arms, either.
One of the earliest symptoms that appeared before my multiple sclerosis (MS) diagnosis was imbalance. I remember turning my head to look at something and feeling slightly off-balance. I didn’t think much of it at the time, but that wobbly sensation gradually increased through the years. Occasionally, I…
In case you missed them, here are some news stories that appeared in MS News Today that caught my eye over the past week. Younger MS Patients Who Are Hospitalized May Be at Higher Risk of Quitting Treatment, Study Reports Why would young patients, whose MS is…
I’ve been considering writing about the fun, fun world of catheters. As this column is morphing into some sort of diary, let’s deal with this week’s medical procedural drama. Welcome to UTI (urinary tract infection) week. Anyone who uses a catheter is prone to a higher incidence of…
How cool is this? Though it's not yet related to multiple sclerosis, researchers are developing a Band-Aid-size patch that can inoculate someone with the flu vaccine. The patch is made up of 100 solid, water-soluble microneedles that are just long enough to penetrate the skin. They’re contained in an area about the size of a dime. Adhesive helps the patch grip the skin during the administration of the vaccine, which is encapsulated in the needles and is released in about 20 minutes, as the needle tips dissolve. The patch is then peeled away and discarded like a used bandage strip. The researchers, working at Georgia Tech and Emory University, report that in their Phase I clinical trial the patch was just as effective in generating immunity against the flu as the traditional flu shot. They believe the microneedle patch can save money because it is easily self-administered, it can be transported and stored without refrigeration, and it’s easy to dispose of without needing a sharps waste container. Above all, says principal investigator Nadine Rouphael, MD, of the Emory University School of Medicine, “having the option of a flu vaccine that can be easily and painlessly self-administered could increase coverage and protection by this important vaccine.” Now, I don’t want to jump the gun. Although the researchers are working to develop these microneedle patches for use with other vaccines, including measles, rubella and polio, they’ve only completed the first phase of their clinical trials. They’re now planning a Phase 2 trial with more participants. Whether MS drugs might, someday, be administered this way is anyone’s guess. But, it certainly would be nice if one day, instead of jabbing yourself in the thigh for your scheduled MS shot, you could deliver your MS medication by just putting a Band-Aid on your skin.
Ocrevus and Me
I’ve done it! I made the treatment switch that so many people with multiple sclerosis are talking about: I said goodbye to Tysabri (natalizumab) and am now on Ocrevus (ocrelizumab) as my disease-modifying therapy (DMT). I went through 56 monthly infusions (or maybe more, I’ve…
Just when I thought I had experienced every multiple sclerosis (MS) symptom possible, another one emerges: sciatic nerve pain. It can happen to anyone, but it is also associated with MS. A couple of months ago, I woke up with a sharp knife-type pain on the upper back side…
Go, Go Avocado!
I don’t normally go in for trends. For example, I don’t own a single pair of skinny jeans. I’ve never tried a Unicorn Frappuccino. I’m not on Instagram or Snapchat. I didn’t participate in the Ice Bucket Challenge. And I refuse to use the words “doggo,” “pupper,”…
So, I recently signed up to join a new and much closer exercise class. The previous drive of nearly an hour each way had proved to be beyond my range. Actually doing exercise when I got there seemed bonkers! But I haven’t been there as of yet ― my…
It’s been a little over six months since I completed Round 1 of my Lemtrada infusions, so it’s time again to ask myself, “How am I doing?” The answer: I’m not sure. For many years, my brain MRI has remained unchanged. I can’t remember the last time…
(Editor’s note: Tamara Sellman continues her occasional series on the MS alphabet with this first of two columns about terms starting with the letter “F.”) When it comes to multiple sclerosis, mastering an understanding of the disease means you need to mind your Ps and…
How can you care for your MS when a loved one is ill? You want to be able to care for others despite your own daily struggles. As unpredictable as MS is, what is predictable is that your life will be touched by the…
Last week, I shared details of Everyday Matters, a program by the National Multiple Sclerosis Society. This self-directed, multi-week program uses the principles of positive psychology. The readings, lessons, and exercises need not be completed in a particular order, but I am going to start my exploration of…
Though my first brush with MS came in 2000 or so, I wasn’t diagnosed until December 2013 with primary progressive MS. Shortly after the diagnosis, I began scouring the internet for information about the disease and how to live with it. Sound familiar? I found…
Religion and spirituality are personal, delicate issues for many. Various schools of thought exist, and I haven’t the desire or the ability to deem one more important than the other. Writing about religious and spiritual matters is at times taboo in an often secular world. I can, however,…
During a routine exam with my neurologist recently, I asked her a question I’d never thought to ask before: “Why do you order regular MRIs of my brain, but not of my spine?” Interestingly, within a few days of my exam, a Harvard Med School study was…
MS News That Caught My Eye This Week: Brain Scans, Spasticity, Tecfidera Study and Cigarettes
In case you missed them, here are some news stories that appeared in MS News Today that caught my eye over the past week. **** Harvard Study Finds No Link Between Clinical Exams and MRIs in Some MS Patients I’m really not surprised…
So Tired of This
It’s summer in the U.K., and it’s hot. That’s cause for celebration for everyone but us. It’s actually the hottest June day since 1986. Heat immediately spikes my fatigue. For some of us, the cold does the same. Thankfully, not me — I get the winter off. According…
Several months ago, I wrote a column about Andrew Barclay. Barclay died in an assisted suicide in December. He’d had multiple sclerosis for many years. Colin Campbell is a 56-year-old MS patient who lives in Inverness, Scotland. He also wanted to die. In fact, he was scheduled…
(Editor’s note: Tamara Sellman continues her occasional series on the MS alphabet with this second of two parts on terms starting with the letter “E.” Read the first part here.) When it comes to multiple sclerosis, mastering an understanding of the disease means you…
Many years ago, not long after my MS diagnosis, my cousin gave me a “gratitude journal.” At that time, I was all too aware of what I was not grateful for. The thought of giving thanks was daunting. But the journal suggested writing down just three things a…
Earlier this year, I visited a physical therapist I’d seen way back in my running days to devise a home workout routine that could help me address not only foot drop-related issues, but also a routine I’d actually do. One of the challenges I have with PT is doing…
Catheterization training in the hospital did not prepare me for how to manage on a daily basis. In my last column, I described how I ended up in the hospital unable to urinate at all. In this column, I will cover more details about what I learned along…
Hyping MS Headlines Is Uncool
Once again, over the past couple of weeks, we’ve been blasted with headlines trumpeting a new MS discovery. Last month there were headlines about an inexpensive acne drug that supposedly could be used to reduce the symptoms of early MS. This month it’s headlines about a “cure”…
Many of the symptoms of multiple sclerosis feel random, and can be down right terrifying. I’ve recently been suffering from a scary MS symptom: slurred speech, also known as dysarthria. I open my mouth expecting the words I have chosen to appear. Instead, I slur and stutter…
In case you missed them, here are some news stories that appeared in MS News Today that caught my eye over the past week. **** Air Pollution May Trigger Relapses in MS Patients, French Study Finds Attention if you live in location where the air…
Like millions of other fans, I happily plunked down $13 to launch “Wonder Woman” into blockbuster status on its opening weekend. In fact, I was so excited that I purchased dress-up kits for my gal pal, Amy, and me. Yes, as 40-somethings, we attended a film resplendent…
Looking Back in Anger
Back in the day, I always wanted to be a columnist. That day was so long ago it was before sunrise. In my youthful naivety, I never thought about generating an idea a week. I also never considered it would be about my travails with an illness. Still,…
I was in Boston last week at the headquarters of Sanofi Genzyme. Yes, the big drug company. They brought together several people they consider to be “digital influencers” to pick their brains about what’s on the minds of people like you, who read what we write. Sanofi…
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