I got no hands!

I took the plunge.

Like many of you with multiple sclerosis, I joined the rank & file and am now taking Ampyra (am-PEER-ah).

Ampyra is the hot, new MS drug on the market aimed at improving walking speed for those of us slipping lower on the evolutionary scale.

All together now, in your best Casey Kasem voice…..”And now a long distance dedication to a lowly foot-dragger in Ohio.”

Ampyra works by “fast-tracking” the conversation between your brain and your legs.  Kinda like the fast talking guy from the old FedEx TV commercials.

It has improved the walking speed in 30 to 35% of MSers who have tried it.  Granted that’s not a great success rate, but when I have to use a calendar instead of a stopwatch to measure my walking speed I’ll give it a whirl!  (You gotta figure Keith Richards has taken worse, right?)

Ampyra, like all medications, has some possible side effects, mainly kidney or bladder infections.  But I thought a couple of the most common side effects were amusing…..”weakness” and “problems with balance.”

Duh, problems with balance is my middle name!  My balance can’t get any worse.  I’m like the “Anti-Weeble!”

Also, how ironic, one of Ampyra’s inactive ingredients is “hydropropyl methylcellulose.”  That is the SAME name we kicked around for our youngest child!

Former Desenex foot model.

Seriously, the cool thing about Ampyra, according to my doc, is you’ll know if it works right away.  And if it doesn’t–well, stop taking it.  That was my biggest beef about MS’s “ABC” drugs, I just didn’t know what they were doing.

It’s only been a few days for me—too early to make a call yet.  But I’ll keep you posted.

Have you tried Ampyra?  I would love to hear what it did for you.

I’m not advocating anything.  Remember, My Odd Sock is an expert on nothing, just an idiot on everything.  Consult with your doctor to see if Ampyra is right for you.

And so it goes, putting one foot in front of the other.

Here’s hoping mine (and yours) move just a little bit faster!

This is Maggie, a three-year old Cockapoo rescued from the shelter by my mother.

Weighing just 11 pounds, Maggie is little pooch who gives my Mom big attention.

Maggie is very social, rarely barks and only on occasion will do her business on the floor.  Otherwise, she is the perfect companion!

Hey wait, I thought this was about MS!  Where’s the MS connection?  If I want a dog story, I’ll watch “Animal Planet!”  Now get to the MS, you Lassie-lover!

Pardon me.  The MS.  Yes, of course.

My most visible MS condition…..is foot drop.  I’ve always thought it should be called “foot-drag,” because that is how I walk.  Step…drag.  Step…drag.  Step…drag.  (It’s pretty obvious when I’m in the vicinity of the beach or there is snow on the ground as I leave a distinctive trail!)

It was a usual overnight visit at my Mom’s house…dinner, hanging out, talking and watching TV.

I excused myself and went upstairs to bed around midnight.

Nature called several hours later (I’m a middle-aged man, my bladder is the size of a dixie cup).  I rolled out of bed and did my usual step-drag across the hall to the powder room.

The accused.

Half way there I dragged my right foot into a wet spot.  “Oops, Maggie?” I wondered.

I pulled my foot back and felt around with my hand.  Nothing.  I chalked it up to a weird MS sensation and continued my “step-drag” into the bathroom and then back to bed.

The hours that followed were a restless slumber of tossing, turning & flopping.

In the morning I arose, walked into the hallway and froze….shocked by what I saw before me.  The sight made the Sharon Tate murder scene look tame.

It was fecal carnage.

Brown streaks were sloppily smeared into the light colored carpeting like a Jackson Pollock painting.

All the way into the bathroom, and all the way back into my bedroom.

Upon further “CSI” investigation, I found a turd bit just inside the doorway of the adjacent bedroom.

Piecing together the crime scene, I speculate the events happened as follow…

 

“I stepped in the sh&%.  Upon feeling the wetness, I pulled my foot back and felt the carpeting with my hand.  I felt nothing because the doggie-dung had fastly cemented itself to my instep.  Then, because I must throw my right foot forward to step, I used “kung-poo power” to kick a turd into the next room.”

 

But it was a small bit.  Where might the rest of Maggie’s dung be?

You wouldn’t think?

I step-dragged back into my bedroom.

I took a deep breath to collect myself.  Throwing back the sheets, I thought only of the horse-head scene from “The Godfather.”

There, between my bedsheets was the remainder of Maggie’s product.

My God, it looked like a rohrshock test.  I’ve seen cleaner baby diapers.  The sleep number of this bed was definately number two!  How could this tiny, 11 pound Cockapoo inflict such “Cujo” like damage?

So it goes.  Life with MS adds character to everyday situations.  To be sure, it’s tale wagging fun!

Me. Not actual size.

Summer is here in all its glory.  And like you, I’m stuck inside, chomping at the bit to get out to enjoy summer’s splendor.  The Heatmeister’s “hot & humid” conditions make it impossible for those of us with multiple sclerosis to “doe-see-doe” outside the confines of our air conditioners.  (We can relate to the Bubble-boy in a way.)

I know I’m preaching to the choir here as much of the country has suffered with extreme temps this summer.

I can handle winter’s chill. but when the mercury is pushing the top of the thermometer, I begin to melt like Frosty the Snowman.

Let’s just say I move in sssllllooooww mmmoottiiiooonn.  (Not that I was breaking any land speed records before!)

That's how I feel!

My legs feel like they weight a ton.  I’m walking in a viscous world of wallpaper paste.

My feet lumber along as though I’m wearing a pair of the Mafia’s cement shoes.  I must be walking on a sidewalk made of rodent glue traps.  Godzilla trudged through Japanese cities with greater freedom of movement.

And my legs and feet aren’t the only extremities that dread summer’s “h & h.”

Gloves & wrist weights.

My hands go on an extended coffee break in the heat.

All 10 digits look at me with disgust and say “You want US to do WHAT?”

Good thing I’m not a surgeon as I struggle with a knife & fork.

I can’t even pick my nose with some semblance of dexterity!

My Odd Sock taking a break from the heat.

Sometimes the very best I can do is collapse in front of a register………and chill (Bad pun).

My only solution is venturing outside when the sun goes down.  Yeah, I’m like a gimpy wolfman (Hairy like one anyway).

Problem is, at night, when you move slower than a glacieral land mass, the skeeters pounce on you quicker than one of Michael Vick’s Rottweilers.

Now don’t get me wrong, I’m not complaining as things could be worse.  I just wanted to let off a little steam (Sorry, I couldn’t resist) about how the heat affects my MS.

How do you cope with the summer’s “hot & bother?”

Wipe the sweat from your brow  and share your story with the rest of the class.

Otherwise, stay cool and enjoy every waking moment as it’s getting hot in here.

You knew that–I was just making it clear to the Taliban readers of My Odd Sock.

The Fourth of July is the one day of the year we honor our forefathers by saving an extra 20% at Kohl’s, drinking beer and setting off explosive devices. 

Some honor.

My Odd Sock celebrates the Fourth.

But for those of us with multiple sclerosis, Independence Day means something more.

Is it a day MSers celebrate once a year?

Hell no!

Much like you, I embrace every day I can put my feet on the floor. 

I cheer each day I can brush my teeth, change my own underwear, look up and see the blue sky or feel the rain on my ever-expanding forehead.

I even put my hands together for being able to think and put pen to paper in composing this garbage known as My Odd Sock!

I’m not gloating–just thankful, because there are many out there who can’t do these simple things for themselves.

It’s about independence…..and how long you can keep it.

Me

I get cranky when someone tries to push me when I’m in my wheelchair.

“I got it, I can do it” I say.

Not meaning to be a jerk (my typical demeanor), I understand and am grateful for your courteous gesture–I’m just trying to stake my claim to independence.

It’s one thing to being 80 years old and being pushed in a wheelchair.

It’s a whole other animal to being a healthy looking 46 year old man spinning in a chair.

Hecklephant

WAH WAH WAH, suck it up you goof!

You’re right Hecklephant.  I’ll quit belly-aching.  Sorry.

(To find out who is Hecklephant, see the “cast” page at the top.)

Independence is being able to move and see and speak and care for oneself & others.  To love.  To feel.  To respond.  To breath.

I hope you had a terrific Fourth of July. 

May your independence last for a long long time.

See what you think…..

           “Gardening With Gimps” 

Welcome to HGTV’s “Gardening With Gimps.”  I’m your host My Odd Sock

“Gardening With Gimps” host My Odd Sock

here to share a few landscaping stories on how I get things done around the outside of the My Odd Sock corporate headquarters.

We’re on the clock, so let’s get started….

Tools For Fools.

They say a craftsman is only as good as his tools.  Well, if that’s the case, I would be slightly lower on a scale of tool evolution than a caveman because I have a motley collection of crap tools.  Fisher-Price makes better stuff.

My Odd Sock corporate broom

Take for instance my garage broom.

My incredible shrinking broom.

Someone must have done one helluva lot of sweeping because all of a sudden the bristles of this broom were receding faster than my hairline.

My son suggested a “varmit” was eating the broom.  The jury is still out on what happened to my scalp!

Trimming, not Praying

My neighbor commented on how nice my yard looks.  He said “You are always crawling around, working on it.”

Those of you with multiple sclerosis understand how difficult it is to walk on grass….loss of balance, foot drop….heck, I’d rather get down and crawl to do my trimming.

When crawling, ALWAYS be on "turd alert"

I’ve even been known to sit on my mechanic’s creeper and roll my way down the driveway, gleefully trimming away.

(Is it any wonder my antics have lowered property values in my neighborhood?)

 I have been asked by many why I don’t use my weed wacker to trim.

Here again, unless I suddenly develop  the dexterity of a lemur in my feet—I don’t have enough hands!

The weed wacker takes BOTH hands  to operate.

I need another hand for my cane.

Maybe if I had an “ass-cane”, I could clench a balancing stick with my butt cheeks!

My Odd Sock "Butt-Balancer"

Now, it’s beginning to sound like a vaudeville act.  I just need a few spinning plates and I’ll soon be doing two shows nightly in the Catskills.

Water Me

The hose grips my feet like a python

Watering my flowers is a whole other episode of fun.  Combine me walking on grass…holding a cane…AND a cumbersome, water-spewing hose.  I get more wet than the plants!

I’ve seen guys wrangle a rattlesnake with greater ease!

Don't let it get you

Rattler or garden hose?

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Add it all up and simple, gardening chores get a lot more challenging when you throw MS into the mix.

Let’s hope your “tending the crops” comes easier!

For HGTV’s “Gardening With Gimps” this has been My Odd Sock asking “…Is that smell ME or the compost pile?”

 

I heard about a possible connection, but blew it off because my formative years were filled with plenty of sunshine and a belly full of dairy products every day.

How on Earth could I have developed multiple sclerosis?

But, about a year ago, a blood test revealed my levels of vitamin D were below average.  Very fitting I thought as “below average” was also a good description of my GPA, IQ and athletic ability.

Actually, my low vitamin D level was considered normal for folks living here in NE Ohio.  You see, many share a “D” deficiency as we have the fewest days of sunshine than anywhere in the U.S.  (Rumor has it that’s why the military built an arsenal here—so spy satellites couldn’t get a clear picture.)

So I now take a monthly vitamin D supplement as do many other MSers.

Although I have not been retested, I gotta believe my vitamin D levels have improved.

The Funny Meter

Yeah, yeah, I figured the Funny Meter would rear its ugly head.

Yo, Funny Meter, I’m talking about vitamins here—how funny can it get?

I never met a Nutritionist who plays the clubs in Vegas.  Give me a break will ya!

Sorry for the disruption.

Chocolate 1%

What I think is interesting is how my body may have been telling me it needs more vitamin D all along.

Like a pregnant woman with crazy food cravings, your body is a pretty sharp tack as it lets you know when it needs something.

Maybe my body has been craving more sunlight as I love natural, outdoor light.  I can’t stand a dark room as I must open curtains & blinds to let in the sunshine.

Thinking back, I have had this attraction to natural light for years.  (Much like my attraction to that poster of Farrah Fawcett!)

Are you one with MS who like me loves to throw open the curtains?  (Just make sure you are wearing pants.)

Do you pay attention to your vitamin D levels?

And if you’ve made adjustments, did you notice any improvement in the management of your MS?

Curious as a cow.  Moo.

Georgie Boy

’80’s pop star George Michael sang about it (and showed it to others in a public restroom).

I’m yaking about “religious” faith and what role it plays in your life with multiple sclerosis, cancer, or any disease that has been the subject of a movie on the Lifetime Network.

It’s been said never to discuss are the two subjects of politics and religion.  Well, since I’ve already spoken about politics (”State of Politics”), I might as well write about religion too!

First, let me say I’m not a religious person.  I don’t attend church on a regular basis–never have.

I just never felt comfortable in an organized setting.

Seeing myself as a “spiritual” person, I get more out of quiet thought at an ocean…on top of a mountain…in a forest…a flower garden…or watching the clouds.

Praying most nights before sleep (and between leg spasms!), I ask for blessing of family & friends as well as those who are sick, suffering, hungry and cold.

I say thank you for a day of mobility & wellness but rarely ask for anything except “creativity” (as some of these My Odd Sock’s are rather lame!).

Hey there, it's me.

Other folks (and some with MS) are quite the opposite, attending church while enjoying the shared faith and fellowship of others.

Who is better off, I wonder.

Would my MS not have progressed had I attended church every Sunday.  Or taken religion more seriously?

Am I (or we) being punished for something we did or didn’t do?  (I’ve read that is a common thought among newly diagnosed MSers.)

Maybe you have had similar thoughts—I would love to hear about them!

Either way, mine, yours or theirs, I see faith as a crutch (or cane in my case).  A means of support to stand stronger.

Faith gives us peace of mind in a crazy world.

Throw in a side order of disease, like MS, and faith gives us hope.

I suppose hope is all we are seeking in the end, anyway.  How we find it is as different as our personalities—and our disease.

Here’s to George Michael for reminding us we gotta have faith.

CCSVI isn’t a roman numeral signifying the latest “Rocky” sequel.

CCSVI is an initialism (not an acronym) that stands for the hottest topic of discussion among MSers since the advent of adult diapers.

CCSVI is short for chronic cerebrospinal venous insufficiency.  Now you know why they call it “CCSVI”—-Kinda like how they shorten the name “Richard” to “Dick” (although I would prefer to be called Richard thank you very much).

Anywho, the skinny on CCSVI is that blood flowing from the brain to the heart is slowed and may even reflow BACK to the brain.

It isn’t yet known what role CCSVI plays in the MS game, but further research is being conducted.  You can read the latest on CCSVI in a special report in the Summer 2010 edition of “Momentum,” the magazine of the National MS Society.  Or, visit their website—I offer a link on the right side of this mess I call My Odd Sock.

Water or Vodka?

Now, I am NOT a scientist, although I sometimes portray one on these pages.

But I do scratch my balding, stability-ball sized head when I think about CCSVI and how it may affect me.

I wonder if CCSVI is the reason I am continuously stretching my neck, cracking my neck, seeking a very brief moment of relief from the constant pressure I feel in the back of my head.

I know of another MSer who has this same habit of cracking his neck on the routine basis.

CCSVI pressure?

I feel as though I have a weight laying on the back of my neck all the time.

Is this a result of CCSVI?

Is there some connection here?

Do you feel pressure in the back of YOUR head?

I can’t tell anything looking at my latest MRI films……

Peanut in a Tin Can

But I have to believe if blood collecting in the back of my head is the cause of this continuous pressure I feel, maybe there IS something to this “chronic cerebrospinal venous insufficiency.”

Hoover Dam or the blood in my head?

(With the size of my head, I also now realize the enormous pressure building behind the Hoover Dam!)

Educate yourself about CCSVI because as you may well know, My Odd Sock is an expert on nothing, only an idiot on everything.

Here’s hoping you have terrific blood flow.

Magic 8 Ball, what does my future hold?

“Can I ask you something?” he said.

I figured it was a question about my car.  I drive a Honda Fit.  It’s the kind of small car you would expect to see 10 or 12 clowns pile out of at a circus.

“If you don’t mind me asking, what do you have?” he asked.

His question threw me for a sec.

I assumed he was curious how my head fit into such a little car.  (It’s like squeezing a kickball into a motorcycle helmet!)

“I have MS” I told him.

The guy’s name was Jim and he was just diagnosed with MS a few months earlier.

But he didn’t have to tell me—I could see it in his eyes.

Jim was running scared.

His head was spinning inside.  A million thoughts all at once.

No real focus, just a jumbled mess of fear, confusion, apprehension and hysteria.

Spinning like a top

I know.  We all do.  And if you’ve been told you have cancer, diabetes, heart disease, Aids, whatever—then you know too.

Fourteen years after my diagnosis, I still remember the day I was informed of my MS.  I almost emptied my bladder right there.  Hell, I figured the crinkly paper on the examination table would absorb at least some of it!

And my head began spinning wildly out of control.  Just like Jim’s.  (Or, Lindsay Lohan’s for that matter.)

It took years to calm my thoughts and I vowed to do my best to help others calm their own.

Trim that nose hair!

Thinking back, I realize my unsettled fear was…was what my life has become today.

I walk with a cane, use a wheelchair and live with a smorgasbord of MS quirks.

But the “calmness” comes with the realization that it’s OK.

Sure things could be better–but they could be worse too.  You simply field the grounder that life hits your way.

Jim and I spoke for quite a while.  I answered his questions and addressed his concerns as best I could.  He seemed relieved of some of the pressure he had bottled up inside.  “We’ll talk again” I assured him.  Gotta keep tabs on my new myelin comrade.

If I could offer any advice to those newly diagnosed, I would suggest you talk to another person who has MS.  You will hear a perspective (and hope) not found in books or magazines.  Do anything to keep the pressure from building within.  They key is to avoid running scared.

My cane

She wasn’t shy.  Nor intimidated.

She walked up to me and gingerly picked up my cane which was leaning against the table.

“Don’t touch that” her mother said.

It’s OK” I replied.  “You can play with it” I said to the little girl.

From that moment on, my new friend didn’t leave my side.

Her name was Airyanna.  (I thought she said “Ariel”, like the mermaid) 

She was three-years old.  Cute as a button and wise beyond her years.

I showed Airy a couple of very lame tricks with my cane (I admit my repertoire is rather weak!) and she clapped & squealed with approval.

“I try” she said.  And she performed my “tricks” to perfection.

I applauded for her…while thinking I really need to work on some new tricks.

Noticing her socks adorned with frogs, I said “I like your socks.  Can you jump like a frog?”

She squatted like a frog and jumped several times.  Then she quickly turned to me and said “Your turn!”

“Oh, I can’t…”                                                  

Hop like a frog, you Odd Sock

“Yes you can.”

“No I ca…”

“Yes you can.  Try it.”

So I got down like a frog and made several “leaps,” all without losing my balance or spasticity tightening my legs like a department store mannequin.

Airy clapped with approval and said “See I told you you could do it.”

The kid was right.  Three-year old luck I figured.

Next, she hooked my cane around a chair and jumped over it.

“Your turn” she said.                                      

Jump over the cane, goof

“No, I can’t” I said.

“Yes you can.”

“No I can’t.  I have MS—a degenerative disease of the nervous syste…”

She interrupted “Yes you can.  Try it.”

She would hear nothing of my explanation of MS.

Having a vertical leap that can be measured in millimeters, I picked up my right leg and threw it over the cane.  Then I dragged my left foot over to complete my “jump.”

Airy clapped.  “See I told you you could do it” she exclaimed.

Isn’t it medication time I thought to myself?

I asked her to pass my cane as I wanted to walk and throw a dirty plate into the garbage bin which was about 10 feet away.

“You don’t need this” she said referring to my walking stick.

“Yes I do–I can’t walk witho….”

“Yes you can.”

“No, remember my MS?  The chronic disease?  Myelin sheath…”

“Yes you can.  Try.”

So, slowly but surely.  One foot in front of the other.  My arms out like I was walking the high wire, I made my way to the trash can.

Again, Airy applauded.  “See, I told you!”

Yep she did.  She told me I could do lots of things that I thought this friggin disease had stolen from me.

Who would have known there was no need to consult medical specialists with their wall full of diplomas.  No need to take pills with names I couldn’t pronounce.  Or undergo examinations & treatments costing thousands of dollars.

I only needed to talk to my new little friend, Airyanna.

Thanks kid for giving me some much needed confidence and restoring a little faith & dignity in myself.  The short time we shared together was just a couple of hours, but the impact you made on me will stay with me forever.

Class dismissed.