MS Awareness Week, March 11-17

     Spring has been a favorite season of mine for as long as I can remember, but it has taken on new meanings in recent years. March doesn’t just mark the start of spring, but the MS Association of America declares it “MS Education and Awareness Month.” Since a June 1997 diagnosis, every month has fallen into this category for me. Along the same lines, The National MS Society declares “MS Awareness week” to be March 10-17.

     So what is MS anyhow, and why do we need to be aware? Valid questions. Multiple Sclerosis is an autoimmune disease, meaning that the immune system, which usually attacks things that make us sick, is misbehaving. With MS, the immune system attacks the coating of the nerves, a fatty substance called myelin. Imagine that your nerves are electric wires, and the myelin is the protective rubber coating around the said wires. Then the renegade white blood cells snip away at parts of that myelin “rubber coating.” When a power cord has this type of damage, it can cause a short circuit. Lights may flicker or sparks may fly, depending where the power was headed. Your biggest bundle of nerves is one that you use whether or not you’re thinking about it; you need it in order to think, in fact. The brain is, essentially, a huge, organized bundle of nerves. For an MS-laden immune system, the brain acts as the main target.

This leads to the reason for the name, “Multiple Sclerosis.” Multiple means many, and Sclerosis refers to scars. What happens when the myelin is stripped away? Scars, or lesions, are left behind. Where? The brain, of course. And this leads to that need for “awareness.” You see, the brain is responsible for quite a bit. Imagine if your home had shorts in the wiring at various spots. More than just flickering lights, your doorbell may not work, the furnace may fluctuate, your computer may flash new error messages, and the electrician would have quite a job in store. Scars in the brain can act this way also, affecting mobility, energy, balance, heat sensitivity, vision, speech, memory, and so much more. A few shorts may only affect the lights in the attic, and a person with MS may not experience very many symptoms. But one trait these both share is the same: unpredictability. What symptoms will strike when?

Do you know people who face MS? Whether or not you realize it, you likely do. Eighteen years ago, just a few weeks before we moved to a new home, I discovered that our next-door neighbor had MS. We had lived there for two years, and I had not realized this, as it was “invisible” in many ways. In the United States, it is estimated that 250-350,000 individuals in the USA currently face MS, about two thirds of these female. A person with MS may experience all or only a few of the symptoms mentioned earlier, and this may change. MS symptoms can come and go, and they aren’t very predictable, though they often become worse during stressful times or in hot weather.

So what to do? The good news is that although we had zero medications to fight MS twenty years ago, there are currently sixteen available. A cure remains elusive, but we keep coming closer. Medicine can help slow progression, and more answers are found each day. There isn’t a single, clear cause for the onset of MS, and there likely won’t be a single, clear cure, but continued research and awareness of this disease and its effects is key.

Summer used to be a much-loved season also, but MS has caused me to shift, as my body just can’t tolerate heat. I do adore new life that begins showing itself in spring, and my hope and prayer is that this “MS Awareness Month,” we can gain understanding of these hidden scars that affect our friends and neighbors with MS. As spring progresses, we can know that each day brings us closer to a cure.


You may also read this article in the “SEG-WAY News” of Grant County, Indiana, published March 9, 2018

Marching into Awareness

AngiewalkerAh, the month of March. For the past several years, I have been highlighting MS Awareness Month, wearing my “teacher” hat as I explain what MS is (and isn’t). This also gives me the opportunity to more openly share personal struggles of living with multiple sclerosis.

You may (or may not) have noticed something about this blog during March 2016. What was there to notice, you wonder… it seemed rather absent. The irony of last year’s “Awareness Month” is that I was more aware of my confused nervous system/immune system than I had been in the previous eighteen years. After thinking it was a dental issue that caused my mouth to feel as if was being attacked by scads of tiny, flaming pitchforks any time I tried to speak, swallow, and eat, a series of tests and MRI scans led us to the discovery that a major nerve in my tongue was quite confused. I didn’t have a cavity or worse, but the diagnosis came: “hyposlossal neuralgia.” In essence, the main nerve on the left side of my tongue, allowing me to speak and swallow and such, had a short circuit of sorts.

They say that “knowing is half the battle,” but what I really wanted to know was how to function decently despite the uncooperative tongue. For almost a month, we tried different medications to help tame the crazy nerve. The craziest part of the struggle came when medication that tamed the tongue also took away the ability for my legs to move. At all. Because I appreciate the ability to do such things as go to the restroom, this was not appreciated. So… by April, things were tamed enough. But MS Awareness Month had completely passed me by. And I had visited doctor offices and MRI machines in three different cities, very aware of MS.

So that was 2016. 2017 holds different challenges and paths, as my tongue is tamed. Usually, at least. My point here: MS is unpredictable, and those who live with it are “aware,” no matter what month it is. Over the next week or so, I will be sharing about MS in general. I’ll also share about March’s other campaign, “Disability Awareness Month.” My own journey into and through the world of MS and disability is just one story, and I hope to shine a little light to increase awareness for us all.