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: View from the chair (part 2)

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Today was the day… Gen Con after months of preparation on many arenas, the gaming conference extraordinaire was to begin. And begin it did! Though I’m certain the crowds will feel thicker in days to come, booths certainly looked busy enough. From T.R.’s past experiences, we knew that attendees should plan to purchase the highest priority game first thing in the morning. But this blog isn’t about things we purchased – it will focus on accessibility, and what we did.

First, I have to say that we are quite pleased with our downtown hotel! The Springhill Suites not only offered a handicap-friendly room (that fit ADA standards better than many accessible hotel rooms we’ve visited in the past), but the tables in the public breakfast room are even the proper build that a wheelchair can slide in appropriately. One other reason that we chose this hotel is that it is part of the “skywalk” network leading to the Convention Center. This may sound petty to some readers, but one weather-related MS symptom I face is heat intolerance. If air temperature is over 80 degrees, my energy drains quite horribly. With today’s heat index predicted to reach near 100, I would feel like a pool of jello, unable to move. So suffice it to say, I appreciated the skywalk, even though the route became less direct.

I will admit that our experience was a little less typical, as T.R. is managing the booth of the British company Modiphius, so our family members had “exhibitor” badges. (My husband and daughter are spending each afternoon working in the booth, and they completed much of the set-up work Tuesday and Wednesday. They’ve earned those badges!

Angie badgeToday held more unique bits of adventure than I had foreseen! The first main game we purchased included something special about events like Gen Con: our family was able to demo it, instructed by somebody who knew more about the game than we did. “Hogwarts Battle” was a fun cooperative game, and I even had the chance to play a favorite character, Hermione Granger! Because we played the game there, we each received a ribbon of a Hogwarts House of our choice, so you may notice the “Hufflepuff” ribbon in my badge. We also purchased and perused “Star Trek Panic,” so our family members received Star Trek ribbons for our badges. In honor of my parents, I picked “medical officer.”]

 

I have been a part of game play at Gen Con before, but the Harry Potter game table was set up in such a way that I could sit at the table, my knees didn’t hit strangely, and I didn’t feel like an outsider. Neat indeed! The Convention Center also keeps very tight watch over aisles and such. Not only did we find that people acted courteously in general, but there were even times when two or three wheelchairs were traveling almost the exact same path, side-by-side or in a line. Kinda crazy.

What made the day particularly special? For me, the people! Because T.R. has been completing Freelance projects for a number of publishers, I have heard different names,

even heard voices on podcasts we often listen to. I’ll post a few snapshots here to give an idea of neat interactions we had. One other wasn’t photographed, but I had to mention it here… I enjoyed a fun little conversation with Andrew Looney! I told him of the neat exchange I’d had during our church game day. A game card in Fluxx is signed by him to Angie fluxxme, to be particularly used as a “friend” – and I can attest that he really does look like this illustration!

This is an unusual report for me, as Friday, for me will involve an exciting Writer’s Conference at Taylor University. With so much on my plate this weekend, do I regret spending time and energy attending Gen Con? My answer is simple: not at all! This conference has offered our family an enjoyable, engaging, and memorable time. Our country has come a long way since the ADA was enacted twenty-six years ago, and this slice of gaming time demonstrated to me that physical accommodation has become purposeful, considerate, and expected. Kudos to Indianapolis, the Convention Center, and all who help Gen Con meet its goal to be the Best Four Days of Gaming!

 

Gen Con – views from the chair (part one)

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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

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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 19 – Thirty Days of Thanks

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Today’s 5 Thankful things – keeping smiles alive:

  1. Dentists – I am thankful for a patient and talented dentist who helped us identify a problem back in early March. Thinking the extreme pain in my mouth was due to a cavity, he helped this girl who couldn’t even speak due to mouth pain… he found that it wasn’t a tooth, but he asked a funny question: “Have you ever had neurological problems?” He’s a new dentist to me, but he learned quickly that almost half of my life has been shaped by a mismanaged nervous system. When I saw Dr. Maddox yesterday, he was thrilled that I can speak and eat, while my tongue and teeth cooperate.
  1. Dental Hygienists – What a thankless job I think it would be to work at cleaning somebody else’s teeth. I can only imagine unpleasant breath that could emanate, and one wouldn’t be able to carry on a conversation with somebody while playing on their ivories. But Julie, Candice, and Stephanie have managed to help manage my dental stuff quite nicely – and always with a smile!
  1. Pasta – We always try to have soft food like pasta on days a daughter has an orthodontist appointment, and even though teeth cleaning doesn’t cause sore teeth, we enjoyed pasta last night. One doesn’t always need “reasons” for food choices. And this was a pasta dish that used zucchini, a very good thing.
  1. Toothbrushes and toothpaste – During March, the nerves in my tongue were uncooperative and recoiled when anything came near, particularly an electric toothbrush. I was so glad when medication helped tame those nerves, and my mouth could feel clean again.
  1. Reminder phone calls – I remembered this month’s appointment, but there are months that I don’t have it on the calendar. It’s then that I am extremely thankful for the little phone call I receive a day or two before an appointment, reminding me of an appointment I scheduled six months ago.

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!

 

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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 11, Thirty Days of Thanks – sunsets and more

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Today’s 5 Thankful things:

  1. Last night’s sunset – There is something to be said for watching a sunset over a beautiful lake. And to be able to watch this with a temperature that isn’t too hot – incredibly lovely!

 

  1. Watching the sunset with my dear husband – even more treasured!

 

  1. IMG_1911A silly-looking wheelchair with giant balloon tires ­- …that allow me to roll across the sand and get to the water. Aahhhh.

 

  1. A wonderful husband who rolls the lumbering balloon tire chair to the shore – … where we watch the waves together.
  2. boardwalkBoardwalks – It is so nice to have a sturdy, non-shifting “sidewalk” near the shore. These aren’t needed so much in our county of clay soil, but these paths create a dependable walking path with a picturesque view.

 

 

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