What’s New?

By Lauren Kovacs

I know this is very hard. Fear is paralyzing, even without MS.  You wonder why you didn’t wear your brown pants when trying something new. I am not suggesting Bungee jumping in your wheelchair or am I?

Branch out a bit.  I skied the Swiss Alps, was a gymnast, a college cheerleader and hiked the Highlands of Scotland.  Physical freedom may be way out of reach now for most of us now.  Wheelchair wheels don’t do well in mud and sheep poop.  Do something small instead.  Be adventurous.  My adventurous thing is leaving the house wearing regular jeans.

Try something new to you.  People may not be impressed that you can do something, but you might.  When I rode horses, for therapy, they had me ride backwards to work other muscles.  I hated it and was terrified.  But, not many people have seen the southbound end of a horse while it walked around the ring. Try.  You may surprise yourself.

I have terrible hand coordination. I got a Knifty Knitter hoop and made hats.  Takes me days, but when I am done I know I accomplished something.  Others may not appreciate your hard work, but you know.  Maybe you need to see and touch your accomplishments.

Pick a new thing and try it.  I tried painting with my non-dominant hand. I used to be a great painter and it was so bad my kids could not even tell what it was. I no longer paint, but I tried it.

Maybe try a new thing when no one is around. I tried painting when the kids were at school. It was an epic fail, but the important thing is to try.  It was a horse in a field and my kids thought it was a rock and I had to work hard to even get them to guess.

Try things that are completely new. Painting with my non-dominant hand was a disaster.  I saw the mess on paper, when I was trying something I used to be good at. It just pointed out how MS has taken everything.  Don’t set yourself up for disappointment.

Now, if an opportunity involves something very new, I try it.  Ok, bungee jumping will never happen.  I stay away from what I used to be able to do.  Set yourself up for success.  Trying what you used to do might cause failure.  Trying something totally new might be your thing.

You may find you are awesome at fly-fishing, for example.  What you used to shy away from or dismiss could be a great activity.  Maybe you can pick out great lures for fly-fishing. Playing guitar with your toes might be for you.

Gender norms might need to be crossed.  I know a guy who took up knitting.  Be brave.  It is like when my mom made me eat Lima beans, when I was a kid.  I still hate Lima beans.  Don’t knock it until you try it.  Feel free to knock it out, if it is not for you.

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Prioritizing Needs = You

By Lauren Kovacs

You would think after 20 plus years of MS and three kids I would be good at prioritizing.  I struggle with this monster to this day.  It is not always easy to slay this dragon.  It is relentless and seems to have many lives.

Mentally or on my phone, I try and note my path. I try and tackle one, maybe two, things a day.  Try being the optimal word.  I often plan the week out on Sunday evenings.

It can be hard, too, when prioritizing has a roadblock called “help”.  Many of us rely on help from others.  We end up waiting patiently, all while cooking in stress and anxiety.

I know beggars can’t be choosers.  As if needing help for simple things is not hard enough, we must learn to function on someone else’s schedule and timeline.  Their priorities never click with yours.

Make “you” the priority.  For example, we go to 10am mass.  It is kind of far and my sons are alter servers.  I make sure they don’t smell and are presentable, and then they help me.  Even with all older boys getting out the door is hard.  Being a wrinkled mess, nuclear breath, and non-matching clothes don’t bother them apparently.  Yet, my shoes are tied and I am always ready.

I get up at 6:30am and take my medication, eat, get dressed, do my eyeliner several times, hair only goes into ponytail or down and do any other leaving the house stuff.  I save the things I can’t do for later.  Some days I am completely ready on my own and others I am not.

Yes, it drives me insane, after 20 minutes I can’t tie my shoes.  I may have irritated my ears trying to put earrings on, but at least my eyeliner is straight.  Some days I can’t button my blouse or fix my collar.

Part of prioritizing is letting go.  I only wear silver earrings without those little backs.  They may not be super matchy-matchy to my outfit, but I have earrings on.  If they were there from days before, no biggy.

Trying to go with the flow is torture for many of us.  Most MS folks are planners.  We usually have plan B, C or maybe even plan E. “E” is usually the “enough is enough” plan.

Is it essential to survival that I have different earring on?  Am I at least modest in my dress to go to church?  I hate dresses, but I make sure my pants look nice.  Are my pants easy up and down?  How easily can I get to the bathroom?  The wheelchair does not fit in there, but the walker will.  Are my bowels and bladder empty?

Priorities change like our MS does. Factor in everything.  Is it a huge deal that you had to wear sneakers?  Yes, the black boots would have looked much better. The dress pants would look good, but they have a button and zipper.  Are my fingers working today?  Will I be too tired?

Overthinking might, in some cases, be helpful.  Choose the path with less stress.  Ask yourself what you can do by yourself, if you built in extra time. If I just can’t button my shirt, I wear one without buttons or ask for help, if time permits.

Prioritizing can be exhausting.  Even making phone calls is tough, when your speech is garbled.  I worry someone will report me because I sound drunk.  It gets worse as the day progresses.

I try and keep appointments for late morning.  My day is prioritizing.  Everything comes before my afternoon nap. Once I nap I wind down the day.  My descent into more MS speeds up after lunch.

Making “you” important.  It is a balance to do this on top of family needs.  Don’t brush your wants and needs aside.  I may want my hair pulled half back.  Find a way to meet that want.  I don’t mind having two hairstyles, but there are times I want something different.

Putting make up on is very hard. My eyeballs are used to being stabbed with mascara wands. Baby wipes are great for removing eyeliner that left a wiggly path.  Don’t give up on you because MS is in that path.

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Shopping at Chair Level

By Doug Ankerman

The holiday season means it is time to hunker down into my wheelchair and face the Christmas hustle and bustle at seated-eye level.

Yes, Christmas shopping is all the merrier from the seated position. (Now I know why Santa is always sitting down!)

So with my list in-hand, let’s roll to the mall and purchase our “gifts of joy”……because nothing says “you are special to me” MORE than a shiatsu massaging cushion from Bed, Bath & Beyond.

Come on in

My first hurdle is just getting into the dang store!

This entrance at Sears is clearly marked “handicap accessible,” yet, there is no button to open the door. Forget the wheelchair, I quickly realize my “handicap” is trying to get into the place!

Usually, another courteous shopper will be nearby to help hold the door for you…..but this is Sears. I’ve seen ghost towns with more foot traffic!

Seasonal spirit

I’ve noticed store clerks and other shoppers are extremely helpful when you are in a wheelchair. They go out of their way to assist you. I figure, they feel bad because this guy has wheels for feet. That’s why I am always “over-the-top” positive when in my chair as I try to dispel the “woe is me” wheelchair image.

The squeeze is on

Shopping in a wheelchair can be tough battling crowds and parking — but the real challenge is in the aisles.

The squeeze is on as you try to fit between the displays for house slippers, glittery turtlenecks and NutriBullets.

Here’s an aisle that would be a tight fit for an anorexic fashion model — let alone a wheelchair!

Going through there gave me greater appreciation of  birth.

Caution: Stay Back

Finally, from a seated position, you tend to get an in-your-face view of everyone’s backside.

Gluteus I-Maximus.  I’ve seen butt cracks that make the San Andreas’ fault seem like a fine line.

Hip Huggers scream “uncle” in mercy.  I saw a jeans tag I gotta believe was triple digits!   If denim was an animal — the species would be extinct!

And from my box seat, it is not only “seeing is believing”…no, you see, I get to enjoy the “sounds and smells” of the season as well, if you will.  Let me put it this way, no one claims to eat the holiday fruitcake, but someone is — and I am caught in the cloudy, odoriferous haze that follows.

Through crowds, long lines, charge cards and gift receipts…wheelchairs or not, we muddle through to finish our holiday shopping with moments to spare.  Just enough time to catch our breath before we gather with family & friends — AND gear-up for our December 26th visit to the stores to return our house slippers, glittery turtlenecks and NutriBullet, right?  May you have a tremendous Christmas holiday!

*Doug writes about MS and other nonsense with a humorous twist at myoddsock.com.

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An Ode to Mobility Aids

By Doug Ankerman

As one with multiple sclerosis for twenty-one years, I have much gratitude and thankfulness to share.

Certainly family comes to mind with their heartfelt devotion, care and attention to my round-the-clock stumbling.  My health practitioners earn a much deserved shout-out.  As do complete strangers willing to help load packages into my car, offering their place in long lines, to the deputy opening the cell door.

But this isn’t about them.

This message of gratitude honors the gaggle of mobility aids I depend upon each day.

First, my wheelchair.  My loyal steed.  Though reluctant to use the chair at first, it has become a savior of independence.  Taking me through sun, snow, rain and mud, my wheelchair has jostled my backside countless miles.  It has allowed me to see nature’s wonders.  Witness major events.  And traverse cavernous big-box stores.  Yes, independence would not be possible without my chair and for that I am grateful.

Next, my rollator.  The rollator sits in the garage mostly waiting for yard work to be done.  On those intrepid days, the rollator allows me to walk over uneven grass while keeping my weaving body upright.

Plus the rollator’s basket is perfect for carrying small gardening tools, gloves and chilled beverages on warm days.  (An MSer must keep hydrated, you know.)

Lastly, canes are my everything.  Always within arm’s reach.  Canes allow me to shuffle along without leaving messy fingerprints on the walls.  My canes help me stand.  Canes let me look someone in the eye.  And feel somewhat unburdened.  Although my gait is glacier-esque in speed, I have tried to create an illusion of fleet-footedness with the clever use of Nike swooshes added to their tips.

If you are curious, they didn’t help.  I am still sloth-slow.

My mobility aids have given me life post-diagnosis.  Hand controls, wheelchair, AFO, rollator, Dyna-splint, canes, grab bars, I feel like the Inspector Gadget of disability.  But it is all for a purpose.  A purpose of independence.  And for that I am grateful.

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Thank You, Maybe

By Lauren Kovacs

I admit this is a tough emotion for many MS folks. I am not exactly the “glass is half full,” sparkles, and glitter type. Not sure how I survived as a college cheerleader. Many were bubbly, barf. I was more of the stick in the mud with a giant white bow.

Gratefulness has been a learned trait. I force myself to see the green grass and pretty unicorns. I often see giant animals pooping on my lawn with sharp pointy things on their heads. Many of us have to really try to be thankful. Come on! MS has taken a lot and it is not a generous disease.

Alas, finding thankfulness is hard, but we must try. I would fit in well with a Grinch family, however green is not my color. See, glass half empty!

I have to “cheer” myself on just to get to the bathroom in time.  Finding things to be grateful for takes on a new identity. If I manage to tie my shoe or put elastic in my hair on the first try, I celebrate it.

Small things deserve great thanks. MS folks adapt better than most. I am a lefty, yet I have learned to apply eyeliner with my right hand. I drove my figure skating instructor nuts because I spun like a lefty and jumped like a righty. In kindergarten, I cut paper right but, wrote left. Drove my teacher crazy enough to put me in some special ed. classes. Little did I know that one day this ambidextrous trait would come in handy. That is something to be very thankful for.  I still can’t write right handed, yet every other thing I can do with my right hand.

I learn to be thankful for much smaller things. Simple stuff does matter. Think about just getting through the day. Toilet paper, straws, walkers, naps and all that meaningless stuff is, in fact, deserving of our thanks.

I am thankful my boys can enjoy gluten. Stuffing at Thanksgiving would suck. I am grateful I have enough self-control to resist it. Talk about resisting temptation.

MS reveals how tiny stuff can induce great thanks. I am very thankful for anti-bacterial wipes. I can de-germ my walker and wheelchair wheels pretty easily. Think about where they go. When I did horseback riding therapy, those wheels went over horse poop.

Even though I have had to give up my jeans, being small enough to wear fun kid-size leggings is a trade off. Yes, I have lots of sneakers too, but less of an ankle injury risk than heels. I am truly thankful for that.

It may take some thought, but we can find stuff to be grateful for. It might seem simple to some. I get weird looks for being thankful for my piggy dog, but he cleans up all the food I drop on the floor. He is now on a diet though. Poor guy. He loves food.

I am thankful for having a life jacket. Drowning in my own pool was not on my bucket list. Small things to be grateful for shows humility. It can be fun, too.  I love that I can paint my own nails, if I use glitter polish. Covers the mess well.

When going around the table talking about what you are thankful for, think. Small things show that you have character. It might make someone else see how blessings come in all sizes. I personally, am grateful for whoever invented elastics for pants. Sweet tea is a close second. Electric toothbrushes are a lifesaver, too. No swamp mouth.

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