OK, maybe “access denied” is a bit extreme.

Let’s try “access impeded”…or “access inconvenienced.”

Whatever you call it, if you use a wheelchair, scooter or rollator, getting around, into, or out of a place, building or activity can be downright frustrating at times.

For instance, just this past weekend, I attended a football game in a stadium that was built WAY before the A.D.A. was even a glimmer of an idea.

The stadium probably dated somewhere between the Roman Empire and the birth of Gandhi.  Needless to say it wasn’t easy to plant my tuckus on that splintery, wooden plank of a seat!

The journey began by rolling my wheelchair down a long. very narrow walkway situated below & in front of the grandstand.  The walkway had chain-link fencing along both sides.  And it was narrow–my knuckles scraped the sides as I rolled my chair.  So narrow in fact, you can find wider birth canals on the “Jerry Springer Show.”  It was so close Gabourey Sidibe’s skinny jeans have more room!

Finally reaching the end, bloody knuckles and all, I realized with no ramp I would be forced to ditch the wheelchair and climb the dozen steps to the seating area. 

Being early evening, fatigue was working overtime…that, along with nervousness of a new situation…and spasticity from a two-hour car ride were triple-teaming me to a frustrated pulp!  But forging ahead, I held my cane & the rail in my right hand while using my left hand to lift, first my left leg and then my right leg up EACH step.

It was ridiculously slow going.  Egyptians built the pyramids faster!

Reaching the top, I felt like Sir Edmund Hillary.  I wanted to plant a flag into the ground to signify my conquest…but instead, I lost grip of my cane and it slipped between the boards, falling 12 feet to the ground below–doinking a woman on the head along the way.

I let loose with a sentence of expletives that would make a street thug blush.  I was proud of using a curse word as a subject, verb, adjective and even a preposition in the SAME sentence!

Some kind soul handed my cane back through the boards and off I went to find a seat.

As I mentioned before, these were old bleachers, so there were no railings, not even aisles for that matter!  There was no way I could climb the seats for a higher vantage point–so in the front row I sat.  (With everyone milling in front of me, I realized why no one sat in the front row!)

After the game, we waited for everyone to exit the stands before I attempted my herky-jerky walk.  We went through the same obstacle course as before, only this time we were directed to a different exit gate.  This gate was inspired by the stockyards of Chicago as it included a chain-link (they LOVE chain-link in this place!) U-shaped corral.  Again, it was so narrow, I had to collapse my wheelchair and walk through the steel-cage confines to freedom.  (My God, I’ve been in roomier MRI tubes!)

My point in sharing this long-winded adventure is that we as MSers are quite blessed to live in the era we do.  The work of the A.D.A. has opened doors for those of us who need a little extra assistance.  Sure, from time to time we run into obstacles like I faced last Friday night.  But they only serve to remind us of how far we’ve come!

Have a horror story you dare to share?  Lay it on us and listen for the chorus singing “Been there-Done that!”

Happy Trails.

A Message from the Editor

This edition of My Odd Sock has been rated “S” for “serious.”

The usual low-brow humor has been replaced by a lot of wah-wah, belly-aching chit-chat and visions of the world’s smallest violin playing “My Heart Bleeds For You.”

–Helen Eleanor Saggybags,  My Odd Sock Editor-In-Chief

*     *     *     *     *     *     *     *     *     *

My doctor didn’t mention it.

I didn’t read about it in any book of multiple sclerosis.

Nor did I see it mentioned in a magazine or on the web.

When I was drafted to receive my MS diagnosis way back when, I heard about mobility and spasticity, bowel & bladder control, balance, vision and cognitive function—those I could handle.  But it was the unmentioned condition I had and continue to have the biggest problem wrapping my arms around.

It’s the doubt!

The cloak of MS doubt.

Multiple sclerosis has covered my big, melon head with doubt.  A darkness that has caused me to doubt my abilities..and my self.

Doubting my role as a spouse, a parent, a provider.

Doubting kicks in when people begin to do chores for you–things like cleaning your gutters or cutting grass–things you USE to do.

Or when your spouse gets a second, even a third job job to make ends meet.

When you can’t bring in the groceries.  And when you can’t help at a school function, doubt is always there to console you.

Doubt is definitely the unsung bastard child of MS!

Doubt zaps your confidence like humidity steals your energy level.

I can use a cane to help with my balance.  A wheelchair to help with my fatigue.  But there is nothing to help one through a spell of self-doubt.

So I write about it, hoping you’ll lend some words of wisdom to me and others who are dealing with the “doubt” that comes with MS.

Although it can be a daily knock-down, drag-out, I’m beginning to peek out from under the doubt and getting on with life as an MSer.

Some days are easier than others.  But that’s typical of our disease.  You have good days–and not so good days.

I try to focus on what I have, rather than what I don’t.  How lucky I am, instead of unlucky.  How fortunate…than not so.

Yep, doubt can be one tough pill to swallow.  Maybe that is why they don’t mention it.  Some things you just have to figure out on your own!

Today, texting has become a popular vehicle of communication.

People of all ages use texting, rather than calling, as their preferred choice of sharing information.

Texting has spawned a whole new, Internet language of word & phrase shorthand to aid in rapid conversation.

Not to be left out, those of us with multiple sclerosis, can enjoy our own special Internet language.

With that, My Odd Sock proudly presents….

HH-     Heat & Humidity

NE-     No Energy

WL-     Weak Legs

ILAC-     I Love Air Conditioning

SH-     Shopping

GC-     Grocery

SOS-     Scooter Stuck Between Registers.  Send Help!

IVS-     IV Steroids

SOL-     Solumedrol

UCK-     Mouth Tastes Like Metal

AFO-     Ankle Foot Orthoses

FR-     Foot Roll

PF-     Plantar Flexion

DAMMIT-     Can’t Fit AFO Into MY Dress Shoes!

C-     Copaxone

A-     Avonex

R-     Rebif

SN-     Shot Night

AATB?-     Arm?  Ass?  Thigh?  Belly?

FD-     Foot Drop

SH#T!-     Foot Drop Caused Me To Step In Dog Poop

MA-     Mobility Aids

CN-     Cane

CR-     Crutches

RL-     Rollator

WC-     Wheel Chair

PS-     Power Scooter

HUIKLLJHVBGHTF-     Got Every Friggin Mobility Device Known To Man

SERHFTUKLIKBVK-     Toddler Playing With Cell Phone

DDDDDOOOIINNG-     Texting While Wheelchair Pushed Across Bumpy Yard

BC-     Bladder Control

GGRN-     Gotta Go Right Now

MFRR-     Must Find Rest Room

TL-     Too Late

AIF-     Any I Forgot?

PLAC-     Please Leave A Comment

ASAP-     As Soon As Possible

TE-     The End

Confusion

Yep, crowds, chaos & confusion.  Nothing brings this Odd Sock to his knees faster than a situation involving any of these components.  (A kick to the nether-regions does too, but that’s a different story!)

As my MS has progressed, so has my ability to cope with these attention-diverting, energy-zapping triplets of trouble.

I get spooked by hustle & bustle, loud noises and frantic movement.

What gives with that?

Of course I blame it all on multiple sclerosis.  MS seems to be my “catch-all” of finger pointing!  (I outta know, being the youngest in my family, I got blamed for everything–so now I blame MS.)

If I am walking, it’s the fear of falling that fuels my anxiety.  What if someone trips on my cane?  What if my toe catches on something?  What if I get bumped and loose my balance?

I take pratfalls like a silent-movie comedian.  I’ve taken a tumble in a crowd before–and I sure as hell don’t want it to happen again.  So when walking I must concentrate very hard…and any ANY disruption can be a disaster!

Why not use a rollator or a wheelchair I hear you shout.

Well, let me tell you–my anxiety level still rises even with my backside firmly planted in a wheelchair!  People cut in & out in front of you.  I must stare intently at their feet–careful not to clip their heels with my foot rests.

In a crowd, a wheelchair rider sees nothing but asses to the front…and crotches to either side.  “Tramp Stamps” fill your sight lines while the after- effects of someone’s lunch fills your sense of smell.

Several years ago, I freaked out during a buffet luncheon on my first day on a cruise ship.  It was all three…crowds…chaos…and confusion.

People swarmed & darted like ravenous jackals.  I couldn’t move anywhere in my wheelchair without stopping, tripping or impeding someone’s feeding frenzy.

Gluttony Gone Wild!

I had lost my family in the rush and couldn’t get near enough to the food to make a selection.  Several staff members asked to help but I was so shocked I couldn’t answer.  Thankfully, my wife found me—realized I was near meltdown–and helped me to a better place.

The Funny Meter

Oh, thanks Funny Meter.

I’m telling the story of when I wanted to shove a butter knife into my thigh–and you want me to be funny?

Real class Funny Meter!

So I ask you…Is it MS?

Is MS the maestro who conducts my orchestra of anxiety?

Am I the only one who fears the triple threat of crowds, chaos & confusion?

I share my thoughts & experiences for your entertaiment, surely.  But also to help you realize you are not alone.  As MSers, we face many unique challenges and maybe, just maybe…we can get through them together.  (Geez, that sounds like a movie premise on Lifetime!)

Here are to calmer days ahead.

My Odd Sock and multiple sclerosis go Hollywood!

Many titles of feature films can be related to MS in some way, shape or form.  My Odd Sock thought it might be fun to draw some red-carpet comparisons to show you how!

Check out these flicks & what they mean in the world of MS…..

The Color Purple   (The color of the bruise on your hip from falling.)

A Bridge Too Far   (Heck, when I’m walking everything is too far!)

The Way We Were

Saturday Night Fever   (Describes flu-like symptoms from Avonex shot.)

The Good, the Bad and the Ugly

When It Rains   (MSer’s really get wet!)

Close Encounters of the Third Kind   (Trying to get through a crowd with a rollator.)

The Right Stuff   (Acting like an astronaut inside an MRI tube.)

Easy Rider

Easy Rider   (Being pushed in a wheelchair!)

Poseidon Adventure   (Describes my bladder control issues.)

I, Robot   (Walking like 3CPO)

Footloose   (Foot drop folks can relate!)

Stranger Than Fiction   (The fluttery MS feelings running down your leg)

Seven Times A Day   (Duh!  Describes my urges to pee!)

Slumdog Millionaire   (Those of us on S.S. disability)

The Adventures of Elmo In Grouchland  (My Odd Sock on a bad day)

White Men Can’t Jump   (Especially when we have MS!)

The Money Pit   (Cost of your MS medication)

Chitty Chitty Bang Bang   (My stomach after eating Mexican)

Invasion of The Body Snatchers   (Yeah, what the hell happened to my body?)

The Great Escape   (Trying to get a scooter thru the checkout lane at the grocery)

On Golden Pond   (Having a potty accident while sitting in a wheelchair)

In God’s Hands   (Isn’t everything?)

The Longest Yard and Walking Tall   (A gaited double-feature!)

Finding Neverland   (Buttoning a shirt with fumble-fingers)

Zoolander   (Any meeting of an MS support group!)

Dumb and Dumber   (About an MSer who attempts to do thing he/she shouldn’t—and then tries to do it AGAIN)

Demolition Man   (Guy with MS emptying a dishwasher)

The Full Monty   (Trying to keep your balance while pulling up your pants inside a public bathroom stall)

Fahrenheight 451   (The damn temperature inside the doctor’s waiting room!)

Real Genius   (The lazy shopper who leaves his cart in the disabled parking space)

And finally, one last movie…

One Flew Over The Cuckoo’s Nest   (Any visit to your local Social Security Office)

We hope you have enjoyed this look at Hollywood’s salute to MS.

If you can think of any movie that relates to your MS experience, please share as we would love to hear it.

See you in the theater!  (I’ll be the one kicking the back of your seat)

Scary stuff, eh kids?

Thinking back to the day of your MS diagnosis, you may recall the fanatically-frightened thought pattern of your brain.

A whirlwind of what-ifs, how’s thats and it-can’t-be’s.

Heart pounding mental images of canes, walkers and wheelchairs, oh my!

It was the fear of the future…and what the future holds.

We know because each of us have experienced our own “movie of the week” moment.  I believe I may have dampened my Dockers upon hearing the news!

Looking back

Today, nearly 15 years after my diagnosis, I look down to find my cane hooked over my thigh..there is an AFO strapped to my leg..a rollator in the garage..and a wheel chair in the trunk of my hand-controlled car!

All of my previous fears.  All of my terrifying dreams….have come true.

And as I lift my hand to scratch my ever-expanding forehead I realize one thing……….that it isn’t as bad as I had feared!

I also realized I don’t fear the future like before.  In fact, I rarely think of it (like changing my toothbrush)!  Because now I know it is all about today.  Today is all we have for sure!

Let me ask you, did you fear the future with your diagnosis?  Can you look back now and remember all of your needless worry?  I would love to hear your side!

Yeah, the scary stuff of MS just isn’t that frightful anymore.  Maybe it is the peace that resides within that makes us calmer.  An appreciation for what we have—rather than what we have lost.

This post has been rated “weak” by the My Odd Sock Advisory Board

I will punish myself by watching back-to-back episodes of Dr.Phil.

The Swiss Army Knife.

First introduced in 1859, this baby was the cat’s meow of knives!

The Swiss Army Knife was decked out like a pimp’s Cadillac Coupe DeVille.  It’s the McGyver of cutlery!

Boasting not only a main blade and a smaller blade too…..plus, tweezers, a toothpick, corkscrew, can-opener, flat-head screwdriver, Phillips-head screwdriver, nail file, scissors, shoelace hook and a key ring.  (With all this stuff, it’s no wonder since the early 1800s,  the Swiss have remained neutral in world affairs.  If their knives are this devastating, imagine what their other weapons must be like!)

In other words, the Swiss Army Knife gives you a bunch of tool options to get the job done.

While digesting that thought (along with a ham sandwich), I began comparing it with your typical MS treatment plan.

With a diagnosis of multiple sclerosis, there are so many doggone symptoms & side effects, you almost need a Swiss Army Knife of treatment options to cover all your bases!

As an example, here is what’s included in My Odd Sock’s Swiss Army Knife of MS treatment:

Baclofen-  Helps control my spasticity, the arch-enemy of my MS.

Me getting Botox

Botox injections-  NOT for my face, but for my legs!  Every three months for spasticity. 

Apitherapy-  Bee stings.  Bee venom therapy.  I have been doing this once or twice a week since 2002.  Pro or con–I don’t know.  I do it for peace of mind.

Supplements-  I’ve taken as many as a dozen different things at one time or another.  Now, it’s just the basic vitamin C & D.

Grrr, stretch those legs!

Stretching-  I stretch more than a WalMart shopper’s tube top.  Like a ten-year-old housecat, I move & reach to reclaim any lost range of motion.

Diet & Exercise-  I try to eat a healthy diet, lower in fat.  Nothing fried.  Exercise helps me beat the MS beast better than anything!  I feel better, more relaxed, less stiffness & muscle spasms.  I try to exercise 30 – 45 minutes four to five times a week.

Depression med-  Yeah, I like many of you with MS, I have experienced the dark side.  My pink pill is why I am so damn perky!

Mobility aids-  Canes, walkers, wheelchair–I’ve got a whole mini-van full of crap!

My Odd Sock's Dynasplint System

AFO & Dynasplint-  Used to correct MS-related foot drop.  Wearing them makes me feel more like Peter Weller in “RoboCop!”

Some of the other MS tools I have tried over the years include Ampyra, the walking drug…massage (NOT the truck-stop kind!)…physical therapy….IV/oral steroids (Unlike Barry Bonds, I knew what I was taking!  And of course the usual disease-modifying injectibles.

We are all different, and what works for one, might not work for another.  But it is interesting to see how YOUR knife compares to others!

Good luck in your fight, soldiers!  Godspeed.

These pages are meant to describe one man’s awkward experiences in coping with multiple sclerosis—and one day last week pretty much summed up what it is like.

Here is the play-by-play of my adventure…

The notice of my important meeting had been stuck beneath a Mickey Mouse refrigerator magnet on the frig door for months.  (It is funny how the refrigerator door has become THEE place to secure/display important documents!)

Nervous, after a restless night, I awoke early.  Did some morning chores, then showered, and got “gussied up” for my appointment.

I finished with 20 minutes to spare before my designated departure time.

Perfect.  (Those of you who DO NOT have MS cannot understand why those of us who DO need such timely, regimented schedules!)

Checking the letter one more time, I realized my meeting was one hour later than I thought.  “No prob,” I mumbled–”gives me time to check email on the computer.”

After a few minutes…and a few boring emails, I began to get drowsy (Baclofen kicked in) and decided to lay down on the couch.

Drawing by Norman Rockhead

Of course you know where this is going.  I zoned out and woke in a startled panic a mere 30 minutes before my meeting.

Now I was in a rush.  Like siblings who never get along, “rushing” and MS are not good partners!

I frantically zipped my coat and was out the door.

New situations/places are not “kosher” to this MSer.  I get nervous if I’m not sure of the surroundings and my meeting was one of those times.

Now, running late, heart racing, I stiffened like Frankenstein in a body cast!

Artist flunked matchbook art school

I raced downtown and found the building situated high on a steep hill.

Parking my car across the street, I got my wheelchair from the trunk and began rolling to the corner intersection to cross.

The sidewalks were in bad-shape bumpy, making it extremely difficult to make my way to the accessible curb.

Luckily, having the strength of ten men, I muscle my chair to the corner of the busy city intersection…and wait for the light to change.

Green.  Rolling across the street I noticed two things.  One, there is no way I can roll my wheelchair up the hill to the building.  And, two, the handicap-accessible curb sucks!  It wasn’t a sloping ramp—but a mini-curb, so I will have to stand to get my chair over the bump.

I rise…get my bearing…and reach behind for my chair.

Not there.

I turn & look in horror as my wheelchair spins and begins rolling, accelerating down the street like a soap-box derby racer.

Eyewitness account. Artist's rendering.

My frustration peaks and I let out a flurry of expletives!

The wheelchair continues racing down the hill, through a five-lane intersection!

More expletives for good measure.

All of a sudden this car comes to a screeching halt in the intersection, the door opens and out jumps a woman in a business suit.  She begins sprinting like FloJo in pursuit of my chair.

Drawn by an out-of-work police sketch artist.

Wearing high-heels, FloJo ran the 30-40 yard distance in a time that made NFL scouts proud! 

She returned my errant wheelchair and I graciously thanked her.

But I still had to get up that damn hill!

Shuffling behind the chair, I took three steps before a guy appeared out of nowhere and offered to push me into the building.

Accepting his offer, he pushed while I rode…stiff like a piece of lumber.  (Stress had made my body so rigid, I couldn’t bend my legs.  I resembled a mannequin from Old Navy—without the goofy smile!)

Anyway, I made it to my meeting with a minute to spare.

Exiting the building, I caught my reflection in a window.  My shirt collar was standing-up and the zipper of my coat had split and was gaping open.  I looked like a disheveled homeless guy–in a wheelchair no less!

So that was my day.  Maybe not a typical day, but when you have MS–what day is typical, right?

Has my story brought out experiences of your own?  Please share, as we can all enjoy a chuckle in an uphill world.

Blurry from shopping in the chair!

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

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

Well, 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.

Open the door!

Come on in. 

My Odd Sock’s first hurdle is just getting into the damn 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 traffic!

Seasonal spirit  

 I’ve noticed store clerks & 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,, parking, ect—but the real challenge is in the aisles.

The squeeze is on as you try to fit between the displays for house slippers, Shake Weights & glittery turtlenecks.

Here is a picture of an aisle that would be a tight fit even for a anorexic fashion model- let alone a wheelchair!

Going thru this aisle gave me greater appreciation of a woman giving birth.

I swear when finally making my exit, I heard a “pop!” sound.

Biggens

Finally,  from a  seated position, you tend to get an in-your-face view of big backsides.

Gluteus Maximus in 3-D.

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 Levi’s tag I gotta believe was triple digits!

This butt was so big, 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 & 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 & 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, Shake Weights & glittery turtlenecks, right?

May you have a tremendous Christmas holiday!

Ford vs. Chevy

Pepsi vs. Coke

Ali vs. Frazier

But today, we have…..

The “Thrilla of Mobila”

The Battle of Wheels and Steel!

Rollator vs.  Wheelchair (echo..”chair chair”)

OK, maybe it’s not as hyped as Ali vs. Frazier, but MSer’s who need mobility aids to “keep on truckin” DO have their preferences.

Just as some folks prefer Ford and others prefer Chevy, there are people who would rather use a wheelchair over a rollator.  But unlike the automotive rivals—you’ll never see a cartoon like this……

Personally, I’ll pick my wheelchair 99% of the time.

In the driver’s seat of my “chair” (there’s only 1 seat), I can maneuver like a Formula One driver!  Left.  Right.  In.  Out.  Speed up.  Brake hard.

Using a wheelchair, I feel less…..less disabled I suppose–as ironic as that sounds!

Walking with my cane or a rollator, I am still lurching & rolling worse than the S.S. Minnow on a 3 hour tour.  Not to mention the fatigue factor.  Walking with a rollator drains my “energy tank” similar to an SUV.

Tricked-out wheelchair

Tricked-out rollator

Wheelchair Barbie