MS Awareness and Ivanhoe’s shakes

ms awareness weekI composed the following article for our small local paper, and it’s an updated version of my 2011 piece. I think this milkshake analogy is my favorite way to explain how MS doesn’t always look the same. 



MS Awareness Week, March 5-11

           As spring nears, March again brings “MS Awareness Week.”   I find this interesting, as I experience 52 of these each year, but is nice that a bit of time is set aside to share information with others.  Over 400,000 individuals in the United States face this challenge, so this week offers the chance to shine a light on information that may be new… or misunderstood.

As our friend “G. I. Joe” used to say at the end of each cartoon in the 80s, “Knowing is half the battle.”  Knowing what MS is – and what it isn’t – is helpful in gaining an understanding of this illness.  So what is multiple sclerosis?  It is an autoimmune disorder, meaning that the otherwise helpful immune system is affecting something it shouldn’t.  In this case, the white blood cells are attacking several (multiple) places on the coating of the nerves.  These attacks create scars (sclerosis).  Sounds simple, doesn’t it?  Not so fast.  Consider the nerves that run through the body, not to mention the large bundle of nerve tissue that we call the brain.  In fact, using MRI technology, scars viewed in the brain often lead to a diagnosis of MS.

ivanhoe shakes            If it is anything, MS is unpredictable.  Scientists are still uncertain as to the initial cause of this disease, there is not a certain pattern that it always follows, and it can vary widely from one individual to another.  The best area analogy I have found is the menu of Upland’s Ivanhoe’s restaurant.  Hoe’s is largely known for its 100 varieties of shakes and sundaes, and MS can vary just as much, if not more.  Some are diagnosed and may have a “vanilla acapella,” with no additional or noticeable symptoms after the initial onset.  Others, though, experience a shake not even on the menu, with ingredients they never liked to start with.  Symptoms can include fatigue, loss of coordination, heat sensitivity, slurred speech, cognitive problems… and I’ll stop there, as this is a bit disheartening.

Besides knowing what MS is, it is equally important that we realize what it isn’t.  MS is not a death sentence: though chronic, it is not fatal.  MS is also not the sign that somebody has lost his or her ability to be productive.  Every individual, like those beloved gourmet shakes, is different.  The last two homes where we lived had us next door to an individual with MS, something I certainly didn’t realize at first.  You see, MS is not obvious.  Two thirds of those diagnosed with multiple sclerosis are female, but this means that many are also male.  MS is also not age-specific.  A few are diagnosed as young as six, some in their 50s or 60s, but many in their 20s or 30s.  Many are from Western European ancestry, but this also varies.  And about a fourth of those with MS end in a wheelchair, but three fourths do not.

So why should we be aware?  More and more medical breakthroughs are on the horizon.  There are currently fourteen medications on the market to help slow MS progression, and a cure is closer each day.  In the meantime, patience and understanding are key in helping support our friends and neighbors with MS.  Now you know, and though simply knowing may not be half the battle, it is certainly a step in the right direction.

Angie Knight was diagnosed with MS in 1997 and lives with her husband and daughters in Upland. Visit her “Invisible Issues” blog at https://angieknight.wordpress.com .

So what exactly does MS look like?

Angie MRI 2006

This is actually a slide from my lovely MRI brain photo shoot in spring 2006. Brighter spots are the new active scars. 

…This is like asking what a March day in Indiana looks like. The answers will change from day to day, sometimes minute to minute. One MS descriptor I appreciate is “unpredictable” – scars in the brain can do funny things, and misfiring nerves can be quite disconcerting. I appreciate the image of this posted by MS Lifelines. Ten common symptoms were highlighted here, and I’ll focus on the few that affect me most (I understand these most clearly).

 

  • Cognitive issues: Words sometimes fail me, and I will forget things… it’s hard to tell what is MS and what isn’t, but these issues are frustrating. My thoughts also seem to process more slowly. (This definitely affects the games I choose to play!)
  • Vision: my  eyesight is already poor, but MS scars on the optic nerves sometimes keep my eyes from cooperating. My left eye likes to wander, ignoring messages from the right. In fact, my first symptom in April and May of 1997 was “optic neuritis,” and scarring on the optic nerve led to uncomfortable eye issues that stopped before I knew where they had come from.
  • Fatigue: This isn’t just a case of “I think I’m a bit tired,” but true weariness that strikes. A nap can help, but the need for a mid-day nap can be frustrating, I must admit. The analogy I often use is that of a battery. Most folks start the day with two fully-charged D batteries (8-year-olds may have three), while I have a single AA or AAA size. And on some days, I’m convinced that many have Duracell, while I have the off-brand battery that had been forgotten at the bottom of the drawer.
  • Strength and coordination: This is why people with MS are sometimes mistaken as inebriated. Walking in a straight line is more difficult than one may think! Personally, when my feet and legs stopped moving where my mind was telling them to, I agreed wholeheartedly that I was not going to drive. (Hand controls would not be a good option for me either, as my hands become flakey when my feet also stop cooperating. Not helpful.) I also used to play piano… no, I haven’t “given up,” but accepting the fact that my hands will not move in a detailed, coordinated, practiced method is a truth that I face.

If you care to watch a short video answering the MS questions, the MS Society has a nice one here:

March is MS Awareness and Education Month, but this week is specifically MS Awareness Week.On Friday, I’ll post here the op-ed piece I submitted to our local paper, the SEGway news (for South Eastern Grant County). It is a little more lighthearted than this MS laundry list of sorts. Did you know that MS is like an Ivanhoe’s shake? Visit back in a few days to see how.

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.

Gen Con: chair view (part 3)

 

If you follow my blog but not T.R.’s, you likely missed part three of this Gen Con accessibility mini-portrait. As you may have read yesterday, I left Indianapolis at that time to head home and attend a writers conference at Taylor University. But Gen Con continues, going strong as four very full days create those “Best Four Days in Gaming“.

After my views from the chair, here you can find T.R.’s “Views from behind the chair.”

If others have experiences in this area, positive or negative, I’d love to hear about them!

Gen Con – views from the chair (part one)

IMG_0655

Games: a frequent theme of life in the Knight house. My husband T.R. adores games, and our family enjoys them together in many ways. He not only taught a “Game Studies” course last semester at Taylor University last semester, but he helped organize a “Family Game Night” at our church in July. One reason he and I have enjoyed more games together is simple: board and card games create great activities we can experience in full despite disability.

Over the past four or five years, he has also become more a part of the professional side of gaming. Gradually, he started volunteering for a European game company that was to have a booth in Indianapolis. Then he got to know those in the industry better, and he started freelancing, primarily as a proofreader. Fast forward a few years there, and you will find all four of the Knight Family members at Gen Con.

Gen Con, “The Best Four Days in Gaming,” will find scads of people filling the Indianapolis Convention Center, even spilling into Lucas Oil Stadium this year. Estimates predict 60-70,000 attendees this year, making this event the largest Indy tourist attraction of the year, a larger financial boost for the city than the Indy 500 or NCAA finals.

IMG_0657.JPGIMG_0652How does this affect me? We arrived early, as T.R. and our daughters spent time yesterday and today helping set up a booth, where they’ll be working for a few hours each afternoon. With this large of an event, participants also pick up tickets early. And this is the second way the Convention Center really impressed me! After dinner, we decided to see if we could pick up and exchange a few tickets, changes we had made since sign-up a few months ago. A long line, twenty to thirty minutes long, we were told, snaked through a hallway then around a group of turnstiles. We weren’t certain a wheelchair could make those turns, and T.R. saw a sign near the line’s end that read “Special Services.”

The kind, patient folks helped all four of us with our ticket switches! Being in a wheelchair may not hold a lot of bonuses, but this certainly ranked up there. If this was the second, what was the first? It came in January, when Gen Con attendees are first able to reserve hotel rooms. Because we needed to reserve a handicap accessible room, we were allowed to hold a room before the official time window opened. Proof to me that sometimes, one needs to plan ahead. And ask. Also a demonstration of the professional hospitality one can find in our great state.

I already feel more encouraged about tomorrow’s Gen Con time – you’ll be hearing from me then, as I describe my “view from this chair.”

Day 27 – Thirty Days of Thanks – nineteen years and counting

thankful2

Nineteen years ago on this date, the air felt decidedly hot. And quite humid. And very sunny. (Of course it was… it was July in Indiana.)  So what made it memorable? July 30, 1997 was the day of the official word, the day that Dr. Stevens confirmed that the preliminary June diagnosis was correct: I have Multiple Sclerosis.

Nineteen years later, this journey continues. Few wish for struggles, and I admit that I do not enjoy them, but my MS path does indeed contain pieces for which I give thanks. Today’s list will focus on that:

5 things I’m thankful for, highlighted by MS in my life:

  1. Embraced Slowness –I’ve never been super speedy (as my parents and brothers can vehemently attest), but MS has enforced a movement level that has me running races with snails, and sometimes they win. But you know what we’ve discovered? When you refrain from being speedy, you notice and appreciate things you may have missed otherwise. It can be refreshing.
  2. Connections with others –More people than I can count have contacted me for assurance or advice – or commiseration – after receiving a frightening diagnosis. This was never a lesson I had planned to teach, but I’m thankful that I’m able to step in here at times.
  3. Little everyday ADA blessings –I credit the ADA for many bits of blessing, and I am thankful for things like not-too-steep ramps, early boarding for an airplane, and special seats at the theater. I read last year that we are now a part of “Generation ADA” – we have indeed come a long way. I have an understanding here that I never would have before!
  4. Learning the blessing of giving AND receiving –For some of us, giving is a lot simpler, more comfortable, more joyful than receiving. And rightly so… but I have finally realized that by being an appreciative “receiver,” I bless the life of those on the other side of the equation. For a proud and independent type of person, this wasn’t a simple lesson, but I feel that I am experiencing this truth more fully after nineteen years.
  5. Deeper family relationships –Life as it is in the Knight house requires a level of giving, understanding, patience and love that I don’t think would be if not for challenges MS brings our way. My husband and daughters are so very special, and there are bonds within our family that have been strengthened by this thing called MS.

So “Thankful for MS”? Not today. Thankful for (sometimes hidden) blessings that abound? You bet!

 

[Note about “Thirty Days of Thanks”: I continue being thankful, but writing about days 28-30 will actually begin again August 9. As mentioned above, I am indeed slow, and my energy is limited. I will be attending two conferences, and my writing time and energy will be focused there. I love adopting a mental and spiritual posture of thankfulness, and it will be fun to bring my thirty days to a proper close!]

Day 16 – Thirty Days of Thanks – Anniversary Blessings!

 

Today’s 5 Thankful things – A few of the many reasons I’m thankful for my dear husband:

  1. loverslane

    T.R. and Angie on “Lovers’ Lane” in 2008 at Green Gables

    Today is our second palindromic anniversary – And we’re both geeky enough to know and care what this means. These twenty-two years have been far from perfect, but I’m so glad we’ve enjoyed them together!

  1. T.R. is such a wonderful father to our two girls – From reading or playing catch with little ones to driving them to their junior prom, he has been there for them – a much-loved Daddy indeed!

  1. TR Angie beach chairHe finds ways to help me, even when it’s uncomfortable or highly inconvenient
    – T.R. and I have joined forces in helping define reasonable “accessibility” issues. He’ll help me find solutions to problems I knew were there, but hadn’t pinpointed.
  1. We have grown together in ways we would never have predicted – As my own roles and abilities have been redefined, he has also found ways to rework his own path to help take up the slack caused by my MS limitations. Along the way, he has further developed his skills with gardening and cooking, two things it pains me to leave behind. But I can still do a bit with this, even if vicariously.
  1. My “Knight in faded denim” is more dashing than he was in 1994 – and he was a handsome fellow then!

 

trandangiemacinac

our anniversary trip two years ago

I have so much more to write, but I’ll add specifics over the coming days. I just had to say before the end of today – Happy Anniversary, T.R. – I love you!

Day 7 – Thirty Days of Thanks – physical

disabilitiesThis morning, as I went through normal bits of routine, I couldn’t help but notice a few very obvious snippets of life here that I was very thankful for! Why does that bit of thanks deserve an exclamation point? Well, as you may recall, my “invisible” disability is sometimes very obvious, as MS impedes my dexterity, to put it mildly. So here I’ll share some thankful things that are very real to me.

5 helpful things I’m very thankful for:                      

  1. shower seatChair in the shower – I’m not sure why it took so long for me to figure this out, but last year, my husband and I realized that a shower wasn’t invigorating me, but was exhausting me. After a time or two when I dropped down to the floor, we decided that sitting while showering was worth a try. Boy, did this help!
  1. Bars in the shower grab bars– We’ve had these for almost a decade now, and I appreciate this so much!
  1. toilet gripsHandles around the porcelain “throne” – It is so helpful to have a handhold when sitting on or getting up from the toilet. Not fun to talk about, but even less fun to struggle with when you’re stuck.
  1. Rockerrocker switches and bar light switches – I’m so thankful that our light switches are all this type, so I can hit it with an elbow or palm of my hand, rather than having to hook a toggle switch. For those who have traditional switches, changing to this type is a simple, inexpensive way to add accessibility to a room.
  1. rampSmall ramp near garden – Most of our doors out of our house are at ground level, but our back door has a small step. This was a tiny bit frustrating, but T.R. found a tiny ramp we could order to help fix this stumbling spot. Cool stuff!

Day 1 – Thirty Days of Thanks, year five

thankful2

Five years ago, I was so thankful that my mother was cancer-free! July 2012, I challenged myself to apply a practice of my mother’s during her chemotherapy treatments. She had been encouraged to write “5 things she was thankful for” each day – a sunset, a fragrant rose, a soft pillow…  I don’t know what was recorded in her journal, but my challenge is to follow Mom’s example again. Pondering blessings helps lift the spirit, direct one’s thoughts, help focus on our Father.

This year, starting in March or so, I had extra icky stuff come my way. Those of you who are familiar with MS appreciate with me how this particular bit of immune messiness holds one particular trait I love dearly: unpredictability. With that comes new adventure. And new lessons. Over my thirty days (which begin July 1 and may or may not end on July 30), I’ll plan to share things I’m thankful for that I hadn’t even realized I was taking for granted.

So here we have today’s list…

5 thankful things I appreciate even more (than I did a year ago):

  1. Ability to speak – The tongue is an amazing little organ! I am so thankful that I can twist it around and move or click it in ways that can make intelligible sounds.
  1. Ability to eat – There’s that tongue again. Chewing and swallowing are overrated… until they become almost impossible. I’m so glad that  is (mostly past!
  1. Smoothies – I know, food again… but when uncooperative body bits revolt, smoothies can quench a burning tongue like nothing else.
  1. Our beautiful daughters! – Em and Rach spent the past three weeks or so at a really neat summer learning opportunity, CRAM. And yesterday, they came home! We love our girls and are so happy that they’re home.
  1. Patient, care-giving husband – Particularly the past few months, T.R. has had more reason to keep me up and going. So much to say here, I know more details will come in coming days. 🙂  Love you, T.R.!

Keep watching in days to come – my heart is brimming, and this will be a fun celebration of blessings!

A few thoughts for World MS Day

Today, May 25, is World MS Day. In late February, I began a writing course, and much of my writing time has been devoted there. This blog shall begin regular posts by late June – I just feel that  I must draw attention to this particular day! (Side note – I “celebrated” March as MS Awareness month by experiencing the most difficult MS month I’ve faced in 18+ years. That story will come later, as I really must finish my homework. But I assure you that I was very aware, as was my family.)

Those facing MS are asked to share their stories on this day, so I will do so in the form of a poem. It’s one I’ve shared before, but I refined it a bit. So in honor of World MS Day, here’s my story:

Scars

MS
Multiple Sclerosis.
Many Scars.
a Misbehaving System is what I call it.
You can call it what you wish.

Cells that should kill germs harm others instead, and what do they leave behind?
Scars.
What do they take away?
Energy. Control. Ability. Freedom.

“It’s all in your head,” you say.
And I agree.
With scars in my head,
I sometimes wonder what’s left.
Besides scars.

But then I hear an inner voice, one of assurance:
“Scars are not alone. When you look, you’ll find unexpected gifts:
The gift of Empathy to offer an ear to hear of invisible pain, filled with frustration and hard to see with the outer eye.
The gift of Peace beyond understanding, easier to feel when busy-ness is forced aside and stillness found.
The gift of Love you’ll feel as dear ones see through and beyond your scars, and the truest love, shown through one whose scars bring new life.”

MS
Multiple Sclerosis
More than Scars.
That’s what I call it.
You can call it what you wish.

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