Tough Mudders

“Obstacles don’t have to stop you. If you run into a wall, don’t turn around and give up. Figure out how to climb it, go through it, or work around it.” ~Michael Jordan

What is Tough Mudder?  As The Premier Obstacle Course Series In The World, Tough Mudder events are hardcore 10-12 mile obstacle courses designed by British Special Forces to test your all around strength, stamina, mental grit, and camaraderie.

The Pledge: (three of the statements)

As a Tough Mudder I pledge that…

* I understand that Tough Mudder is not a race but a challenge.

* I help my fellow Mudders complete the course.

* I overcome all fears.

“The dogmas of the quiet past are inadequate to the stormy present. The occasion is piled high with difficulty, and we must rise with the occasion. As our case is new, so we must think anew and act anew.” ~Abraham Lincloln

Recently, I became familiar with Tough Mudder at the gym.  Kevin, one of my gym buddies, was training hard for it and explained a little about the event to me.  *A group, from the gym, were participating together.  (Congrats on their finish!!)  If you have made it this far through my post, you are probably wondering, What does this have to do with Stiff Person Syndrome?

A lot of effort and training goes into participating in the challenges of a Tough Mudder, but participation is a choice.  A diagnosis of Stiff Person Syndrome is a daily (24/7) challenge with an unpredictable, always changing obstacle course.  Participation is never a choice.

The video of a Tough Mudder course is very much what a day of living with SPS can be — a neurologically-challenged body struggling against the physically-distorted reactions of visual perception, the energy/effort required to do the simple, often requiring a helping hand — a grueling obstacle course in the normal world of ordinary and mundane.

During my early years, regressive days or times, I have slid down stairs on my stomach, body rigid and trembling in spasm, drenched in sweat from exertion.  Maneuvering around scattered toys/items on the floor can be equivalent to navigating a minefield.  Crawling through the house, I look(ed) for handholds, footrests, plan a strategic move to round a corner.  With SPS, public outings have morphed into overwhelming challenges at the whim of syndrome symptoms.  The world takes on the appearance and physical grit of a Tough Mudder competition.

Syndrome spasms have twisted my torso muscles, much like wringing a dishrag — hijacking my ability to negotiate mobility release.  Injury from unforeseen body-slam falls becomes a defensive consideration in every move.  Pain is variable, but present every day.  The SPS Mudder is not 10 or 12 miles with a finish, but for every moment, of every day, for life.  There isn’t a training guide for living with the challenges of SPS, nor any debilitating diagnosis.  Training is learned as you live.  I liked three of the statements of the Tough Mudder pledge as they personally pertain to some of my coping strategies.

I cannot compete against the person I was before diagnosis, “not a race but a challenge.”  I can only be the best with who I am now.  “One day at a time.”  It takes a lot of work, determination, endurance, and positive mindset . . . (“strength, stamina, mental grit“).  It is extremely difficult living in a fickle body.  Last week….

For some syndrome mystery, pain was high and ability was low.  Sunday climaxed into a torso lockdown at the grocery.  Leaning on the cart, I managed a slow shuffle, my weight entirely on the cart, as my back arced in the familiar painful contraction of restraint.  Focusing on deep slow breaths, with attempted mind diversion of songs to calm visual overload, I managed to slowly shuffle/slide to the car . . . an accomplishment. Hoo-Rah!

Tuesday, I packed a lunch to take “Leon,” my jogging stroller, for a walk and picnic, outdoor therapy.  My short-circuited SPS nervous system unexpectantly connected?  I was able to trot an easy five miles . . . an accomplishment.  Hoo-Rah!

I can’t say I’ve overcome all fears.  Stiff Person Syndrome has a grim reality that I work hard to face with faith and optimism on a daily basis.  (Sunday was also an emotional challenge.)  I have some beloved syndrome friends (syndrome mudders) who are an encouragement to me many times, an outstretched hand of team support.  Hoo-Rah!

I loved watching the video of the Tough Mudder, the smiles and thrills of accomplishment.  I understand euphoric victory in overcoming a challenge.  My heart smiles at the thrills of my accomplishments, if just pulling weeds, tying my shoes, or jogging with “Leon.”  Hoo-Rah! 


To our nation’s finest and bravest, with loving gratitude — America’s Military.  The Tough Mudder raises money for The Wounded Warrior Project.

Often, I will use soldier and war analogy in describing life with Stiff Person Syndrome.  Living with a disabling disease is a life of front-line combat and the diagnosed are casualties.  To my SPS comrades — thank you for your encouragement, inspiration, and support.♥

*To my gym buddies — thank your for the smiles, fun, understanding, and helping hands.  “Hoo-Rah” for finishing the Tough Mudder!

We are Tough Mudders!

“It’s not what you can’t do, it’s what you can do!” ~ From The Wounded Warrior Project

Guest Blogger on NORD – Rare Disease Day


February 14, 2013

I already view tomorrow as a triumph, crossing the finish line will mean many things to me.  Whatever happens, it is such a priviledge to reach a point in my 20+ years of daily living with the challenges of SPS to attempt something I thought was forever lost.  Whoever reads this, whatever life throws at you, the future is always speculation.  Never lose hope, heart, or the desire to try.

With love,


Dedicated to many who have left prints on my heart & to God, my “refuge & strength.”

Febrary 28, 2013

Febrary 28, 2013

Stepping Out With Rambo & Rocky


John J. Rambo: “…There isn’t one of us that doesn’t want to be someplace else. But this is what we do, who we are. Live for nothing, or die for something…”


Rocky Balboa: “The world ain’t all sunshine and rainbows. It is a very mean and nasty place It will beat you to your knees and keep you there permanently if you let it. You, me or nobody is going to hit as hard as life. But it ain’t about how hard you hit, it is about how hard you can get hit and keep moving forward, how much can you take and keep moving forward. That’s how winning is done!”

During the 80’s I was enthralled by Sylvestor Stallone’s cinematic underdog heroes, John Rambo and Rocky Balboa.  Gutsy determination fueled by “a burning heart” were characteristics of both men challenged with insurmountable obstacles in facing formidable adversaries.  (Add my female appreciation for Sly’s rippling male muscles.)

Diagnosed with Stiff Person Syndrome, my life became a grueling challenge in facing an undefeatable foe.  Appreciation for rippling muscles has become a paralyzing dread.  SPS can hijack my body in uncontrollable waves of painful muscle spasm.   “You, me or nobody is going to hit as hard as life.”  My life is a war, each day a boxing match–Rambo and Rocky, symbolic of living with Stiff Person Syndrome.   “It is about how hard you can get hit and keep moving forward.”

With a typical female mindset, I have a wardrobe of gait aids to accessorize activity with ability.  Rocky and Rambo are my two machismo escorts.  Rambo, aptly decked in camouflage, is my battle comrade for the mall, our war zone.   With my SPS hijacked perceptions, Rambo helps guide me through the minefield of syndrome angst camouflaged as a “normal” shopper.  Packing my artillery of emergency medications, I anticipate possible sniper fire. (Trigger-induced stimulus for symptom attack.)

Rocky is my caddy, companion, and gait aid.   He fits in when I go to the gym carrying my “life support” of medication, cell phone, emergency contact info, snacks for sugar hypos, & glucometer…a Rambo camouflage.  Within the familiar boundaries of the gym, I work on my agoraphobic training of walking “out there.”

Stiff Person Syndrome continually holds my perceptions hostage, creating a possible red alert reaction of symptom overdrive…an Exorcist muscle implosion of Twist & Shout.  A survival mode of fear and avoidance kicks in, further surrendering me to SPS.  Time to reschedule workout training for solo walking against Stiff Person Syndrome assault.

For my first match…

1) Understand my weaknesses.  With a malfunctioning neurological circuit breaker, my perceptions are on continual stimulus overload.   I am possessed with a deranged hyper-sensitivity to a breeze, the cracks in the asphalt, a barking dog, the child on an erratic bike, oncoming walkers, traffic, outside noise, speed, all sucking me into a frenzied vortex of consuming syndrome awareness…”scared stiff.”  Dazed, SPS will deliver a strong upper cut, (spasm), trapped against the ropes or knocking me to the ground.  Olay is no match for stitches, injuries or bruises.

2) Plan an offensive.  To minimize perception distractions, I chose a serene “out there” arena.  I would face my adversary when medication was at peak performance, my body in a co-operative mode.  In my ringside corner, I had a prayerful pep talk with my Heavenly Coach.

3) Commit.  Life with SPS is war, every endeavor a staggering boxing match.  Solo walking, “out there” in an asphalt arena is my chosen challenge.  I strap Rocky into Rambo, my muses, and open the front door…

There’s no easy way out…

Copyright © 2012


Gymspatics – I’ve Got A Secret

“So I said to the gym instructor: ‘Can you teach me to do the splits?’ He said: ‘How flexible are you?’ I said: I can’t make Tuesdays.'” ~Tim Vine

Two years ago, my physical ability started to slightly decline again with increased angst. I reinstated my ‘out there’ walking, armed with two hiking poles for balance creating a normal illusion of incorporating an upper body workout with walking. Sometimes I would struggle-shuffle only to kick-butt power walk at others depending on syndrome whim.

I joined a gym. Undetected ripples and tightened back muscles were undetected by other grunting patrons as I willed myself to do a very slow 3-speed mile on the elliptical. As an obvious gym newbie, nobody knew I am neurologically challenged. SPS, I’ve got a secret.

Two years later, because of hard work, determination and dedication, I can kick out an impressive 3-mile on the elliptical to the questioning awe of two young women 20 years younger than me. Unnoticed by them are the wheeled backpack with contracted hiking pole I drag around the gym as a surrogate walker–my secret.

I manage some light weight machines after concentrated focus to cross aisles toting my surrogate walker. I am complimented on my toned muscles, watched with envy or appreciation from people who do not know the extra effort required of me, my secret.

I work my core. Anything involving my back muscles is a no-go. The forward crunch is a favorite stomach-tightening, back-stretching combo for me. The crossover to the arm weights is an obstacle. Breathe, focus, step. My secret is safe.

These are my good days. Not part of paid membership, my gymspatics…

Two days after my last infusion, I could not leave my car to enter the gym. (Infusion hangover.) My back was rigid, tightening more with contemplation. My workout was a forfeit, one of several. Sugar plummets have also interrupted sessions when SPS was behaving, a double whammy.

Having a good day on the elliptical, I got off to have my body do a lock-down where I could not take a step or let go of the treadmill in front of me. A kind man got off and asked me to sit while he continued his run across the aisle on a different machine.

Trying not to be intrusive, he kept asking me if I was alright. I had a death grip on the treadmill as I chomped some medication. My body was quaking in continual mini spasms. Syndrome fear became a hairball in my throat I could not cough up. After waiting for my meds to kick in, I took my syndrome cue to leave.

Often after an impressive workout, I may need an escort to cross the road with me to my car. Many nice people are helpful, never invading my privacy. My SPS secret remains safe. I am normal, just having some balance issues after working out. Easily understood by gym regulars.

Why do I do it? It feels so good when my body has those periods of remembering how to work with normal efficiency. For a time I can almost pretend I do not have SPS. Through the window, I watch the brisk and fluid beauty of people walking through the parking lot as I do my suspended leg lifts. I marvel at the miracle of movement, grieve for my losses, deeply appreciate my sporadic abilities.

The severity of my symptoms following the years after my diagnosis are a continual haunting in my mind. I do not take anything for granted. Today can change in a second. Getting to where I am now is euphoric, even within the confines of SPS, my gymspastic secret.

Exercise helps my SPS, is a definite help for my diabetes, and great for my emotional well-being. I enjoy my workouts when my physical planets align, not a secret.

I like the following quotation because it fits for me.

“The resistance that you fight physically in the gym and the resistance that you fight in life can only build a strong character.” ~Arnold Schwarzenegger

(Arnold exercised poor judgement resisting in life?)

**For my personal safety, one of the gym’s employees is aware of my condition and where in my surrogate I keep my meds and sugar tablets. My cell phone has emergency contact information in it.

Copyright © 2012