Stiff Person Syndrome -- Living Forward <title/><head> <meta name="Living with Stiff Person Syndrome for 28+ years, I share personal experiences with informative resources." content="awareness, knowledge, hope"> </head> <html> <title>Stiff Person Syndrome Living Forward I have lived with SPS for 25+ years. I share links to SPS info, helpful resources. & blog about my life. Living forward.

​​ ​STIFF PERSON SYNDROME - lIVING FORWARD

​awareness, knowledge, hope



OUT OF THE ASHES
 ​

So often, we believe that we have come to a place that is void of hope and void of possibilities, only to find that it is the very hopelessness that allows us to hit bottom, give up our illusion of control, turn it over, and ask for help.

Out of the ashes of our hopelessness comes the fire of our hope.

~Anne Wilson Shaef ~
 
  
Retrospect is always 20/20 in clarity.  In 1989, I was 32-years-old and filled with hope for my future.  I had two beautiful children, a good job, a nice home, and youth coupled with presumed health.  I was living what many would term, “The American Dream.”  The distant thunder of vague physical symptoms did not register as an impending storm for me.
The four years prior to my 1994 diagnosis of Stiffman Syndrome (Now known as Stiff Person Syndrome), have meshed into an obscure blur.  Only concentrated recollection or some subtle reminder will yield the disjointed details of fact.  The still pictures of memory sometimes lose the continuous flow of relevant order due to the horrendous enormity of living the diagnostic drama.

Denial is easy when you are young, healthy, and the physical symptoms are elusive and vague.  Diagnosed with insulin-dependent diabetes, T1D, in December of 1989, was not a surprise as diabetes runs in my family, afflicting my youngest brother and my father.  The recurring mild stiffness and dull backache, after prolonged sitting, were attributed to lifting at work.

The back problems escalated creating a slight curve in my lower back, lordosis.  My hip joints would pop and hurt.  Stiffness was noted in putting on my shoes.  An unsettling and easily dismissed angst would occur at the top of a flight of stairs or walking in snow.  An intermittent heaviness in walking concerned me.  The onset of recurring falls was not associated with my other symptoms, just blamed on accidental clumsiness.  Consistent with my impending fight with Stiffman Syndrome, I wore a prize-winning shiner from a chipped brow-bone and sported stitches in my head from a couple of falls. 

I had been a distance runner.  When I met my husband, he reintroduced me to my love of the sport.  Even with my burgeoning physical ailments,  I gradually worked my way up to five-mile runs.  I was in sync with my body.  Mentally, I swatted away my concerns as trivial, much like a pesky fly.  Instinctively, I knew better.  I started the four-year quest for medical answers to my escalating physical symptoms.

I was misdiagnosed with a “birth defect.”  Wisely, I chose not to allow this doctor to surgically insert a steel rod in my lower spine.  I was misdiagnosed with a stress fracture, carrying my pregnancy posture, fibromyalgia, and possible Wise Syndrome by different physicians.

I was sent to physical therapy.  The electrical massage would aggravate the difficulty I had in walking.  I tried chiropractic manipulations.  I would leave each session barely able to walk and clinging to the walls for support.  In the wake of my searching, I left many medical specialists scratching their heads at my bizarre symptoms and normal test results.  I was a medical enigma.  I felt like a pariah.

The mental anxiety was escalating along with my physical symptoms.  I did not speak about it because I could not explain it.  Why couldn’t I walk down the incline?  Why was I afraid at the top of stairs, walking in snow, or stepping off a curb?

Walking, at times, felt like I had hardening cement flowing through my veins.  My gait was heavy, resistant, and forced.  I had given up running, hoping that would help ease my back and hip pain.  I had my first full-body spasm during a walk.  Crossing the road, I felt a seeming electrical current zap through my entire body.  I convulsed severely and, ironically, was clinging to a stop sign until the episode subsided.  After collecting myself, I walked home.  I did not speak of the incident.  I did not understand it. 

February 18, 1994, was my last day of work.  After clocking in, my body convulsed in another full-body spasm.  I sat on a guard-rail to try and pull myself together.  My friend came by.  She could tell I was in trouble.  I leaned on her and she walked me back to our work area.  I could not freely walk this day.  I had to continually hang on to something while my entire body was in pain and rigid.  After morning break, withholding tears of hysteria and pain, I went home.  
Arriving home, I had to cling to walls, grasp furniture, stiff and trembling in continual torso spasms, until I was able to fall into the recliner.  Reality slapped me this day.  Denial was no longer an option.  Something was seriously wrong with me.  All of the ramifications hit me hard, the fear of an unknown illness, possible impact on my family, and an uncertain future.  Was I dying?

My husband and I spent the summer on the dizzying circuit of “wrong guesses.”  In September, I was sent to see a neurologist, Dr. Hiroshi Mitsumoto.  After the usual battery of neurological tests, the physical assessment, and recounting my physical symptoms, he uttered the words, “Stiffman Syndrome.”  I did not know whether to be relieved, frightened, or laugh.  Stiffman Syndrome? 

Dr. Mitsumoto requested SMS confirmation with an electromyogram, EMG, (A first for me.) and a glutamic acid decarboxylase (GAD) antibody titer.  I was a definite positive for both tests.  (Guilty on both counts!  First degree SMS!)  My diagnosis was confirmed, Stiffman Syndrome.  This is when my journey officially started.  Everything prior to my diagnosis was just the prelude.

I was prescribed baclofen and diazepam.   Intravenous immunoglobulin, (IVIG) is an immunomodulating therapy.  IVIG was a hopeful treatment for me because of my very high antibody count.  I responded favorably to IVIG.  Because of my favorable response, the treatment was discontinued.  There wasn't a lot known about IVIG, in conjunction with SMS, in 1994.  I physically deteriorated to a more severe place than where I was during diagnosis.

Insurance decided IVIG was experimental and withheld approval for a time.  We fought the decision and eventually won the appeal.  By the time IVIG was reinstated, my response was not as favorable due to my serious physical decline.  My infusions were a five-day series every four weeks.  Gradually, I was tapered to a three-day series every four weeks, to a one-day every four weeks.  The only adverse reactions I had experienced with IVIG were fatigue and possible headache.  Given as a series, I would experience mild edema.

In the beginning.  Those three words, in reference to the beginning of my life with a Stiffman Syndrome diagnosis, echo with an ominous baritone in my mind.  I had written in the past…"I felt like I was abandoned in a dark abyss without a rope or candle."  This is something that happened to other people, not to me.  Incomprehensible fear consumed my thoughts, grief over the loss of my life, despondency over a future that loomed with foreboding, the feeling of inadequacy, and guilt about being a burden were my consuming companions of thought.

I could not fathom how anyone lived with the physical symptoms I experienced.  I was apprehensive over small things: toys scattered on the floor, open stairs, asphalt, and the list goes on.  Apprehension intensified my continual symptoms of spasm, pain, and rigidity.  Any attempt to move would precipitate the myoclonic tremors that could escalate in a fall.  I maneuvered around my house like a rock climber.  I found hand and foot holds on furniture, woodwork, or counter tops.  Sometimes, the only option would be crawling on the floor.  Rigidity could render me completely immobile, frozen, or stuck.  I could not go up and down stairs anymore.  I would, painstakingly, slide or crawl up or down the steps.  The effort would accelerate my heart rate.  I would sweat profusely with the exertion.   I was on a continual aerobic workout.  My world and my home had become a grueling obstacle course.

My husband and I had only been married a year when I received my diagnosis.  Touch was one of my early triggers for a full-body spasm.  He would want to hold me to comfort both of us.  I would yearn for that closeness and comfort.  Pulling me close would start the beginning tremors while I would anticipate the build-up of the whiplash of my entire body jerking in spasm.  (Crack of a whip.)  The pain was great.  We would settle for holding hands.

A difficult trick was giving myself my insulin injection.  During this time, my neck had minimal movement and I could not raise my right arm.  I was a sensitive mousetrap, waiting to snap at the slightest provocation.  I would manage to fill the syringe and creep around the bathroom door to sit on the stool.  I had to hold onto the vanity so I would not eject from the seat when the needle went into my leg.  I would give my shot with my free hand.

My house needed to be SMS-proofed which is impossible because everything becomes a dangerous catalyst.  The vacuum cord, lying across the carpet, took on the writhing characteristics of an anaconda.  The heat from an open oven would cause the familiar tremors and rigor mortis, a possible danger for burn.  I could not step off of the patio into the open space of my yard.  The SMS perception would be equivalent to standing on the narrow ledge of the fourteenth floor of a tall building and attempting to step off.  SMS is a cruel jailor, sentencing one to solitary confinement and house arrest.

Having company became a choreographed event between my husband and me.  We would collaborate on a screenplay to keep me minimally active in my role of hostess, while giving the illusion of being normal.  Body language became an art between us.  He became my prop, costume, and costar during these events.

Gradually, medication and IVIG therapy alleviated the severity of my physical symptoms of Stiffman Syndrome.  I was left to focus on my spirit, the inner me.  How was I going to live my life with the diagnosis of a rare chronic neurological illness?  I was devastated over my assumption that I could not be a good wife or mother because I was physically challenged.  I lost my identity, my sense of self.  What or who was I if I could not “do?”
 
A pivotal moment stands out in my mind.  My daughter was four and in preschool.  Being at home allowed me the luxury of driving her to school.  SMS restrained me from escorting her to the door.  Rain trickled down the car windows as tears ran down my face.  All of the other children had parents or grandparents taking them inside.  My little girl struggled with the heavy door until someone helped her open it.  I felt like a complete failure as a mother.
That morning at home, I did some serious soul searching.  I decided to focus on the things I could do.  I could participate in tea parties.  I could play Barbie with her.  I could sit beside her on the floor while she was having her bath.  I could read bedtime stories to her.  This same principle could be applied to my son, husband, and life.  I would concentrate on what I could do!
  
The beginning is always hard.  You are adjusting to a life-altering diagnosis.  Medical articles are great to explain what is known about the illness and treatment options.  There is no manual to teach you how to live with the challenges.  That is something that comes from your gut, your heart, and your mind.

I learned I was still able to be a wife and a mother.  Love showed me the way.  In the stillness of the confines of my restricted body, I learned my identity is not what I do.  My identity is who I am.  What a liberating epiphany!  I was blessed with a creative imagination, a quirky sense of humor, and a sense of adventure.  I started utilizing these tools and I discovered a bizarre humor in some of the situations SMS put me in.  Creativity showed me ways around an obstacle or fun alternatives.  My sense of adventure opened up possibilities for me that have become treasured memories.  In the pre-SMS hectic pace of life, I was so caught up in “doing;” I forgot how to just “be!” 

Mental Disarray.  I am intrigued with the mental darts SMS will throw at me.  It is easy to explain and understand the physical symptoms of pain, spasm, falls, and injury.  SMS phobias and perceptions are an intriguing and a difficult aspect to accept and understand about the illness.  I felt responsible.  Stiffman Syndrome is not a psychiatric disorder.  The derangement of my nervous system’s gamma aminobutyric acid (GABA), braking system, allows my mind/body connection to misinterpret the correct way to perceive outside stimulus. (Perceptional catalysts for physical symptoms.)
 
Consciously, I am aware it is “only a step,” but my subconscious can interpret it as a greased wire across Niagara Falls.  My body’s self-protective mode kicks into heightened overdrive. (Homeland Security - a twisted SMS version of statue mode and probable spasms!)  Stiffman Syndrome is quite the prankster and my body’s message receipt of the subconscious perceptional misinterpretation becomes a grueling war of SMS anxiety and physical symptoms vs. my realistic awareness of the absurdity of it all.

Two of the worst sentence prefaces for me are – “It is only…” or “It is just…” followed by my perception in question from the coaxing pleas of the well-intentioned.  I fully realize “only” and “just.”  My body is hard or impossible to convince.  That is the hell of Stiffman Syndrome for me.

An analogy I use, for a person not afflicted with SMS, on why I cannot cross the road, hall, parking lot, mall, or yard is this:

Imagine you have to walk across a wobbly log, 10 inches in diameter, that is rough and bumpy, connecting two sides of a riverbank over a swollen, swiftly running river.  The log is only two feet above the water.  It is 30 feet to the other side.  The other side of the bank is filled with onlookers watching and cheering for or against your progress, scrutinizing your moves, and making bets.  The water is filled with large, hungry, snapping crocodiles.  You are barefoot with two juicy, dripping with blood, T-bone steaks strapped to your ankles.  You are wearing a 25-lb. backpack with your wrists bound in handcuffs.  Then you say, “That, my friend, is the very real feeling I can get in doing something normal and simple.  The “feeling” of the imagined danger and obstacles is that “real” for me.”

When my husband and I married, we had a dream.   Our dream was to move out West.  The invasion of Stiffman Syndrome into our lives was not part of the plan.  We decided to live our dream.  We moved, but unfortunately, Stiffman Syndrome moved with us!

The move was cathartic for me.  I left small town scrutiny behind.  The dry climate of the high desert where we lived alleviated some of my SMS discomfort.  One of my external triggers is an extreme sensitivity to weather.  My new neurologist tapered my IVIG down to one day every five weeks.  I was his first and only SMS patient.  I requested an evaluation with a university hospital neurologist just in case a serious problem would come up.

This neurologist wanted me to try a baclofen pump.  For me, the pump is recourse to consider after I have exhausted all other medication combos and treatment options for severely resistant SMS symptoms.  I questioned his suggestion because IVIG and my current medications were efficacious for me.  He did suggest the addition of gabitril to my medications.  In the summer of 2001, I was gradually introduced to a daily dosage of gabitril. Gabitril has greatly helped my other medications be more effective.

As my symptoms gradually lessoned in severity, I worked on some of the phobias SMS tells my mind and body to incorrectly perceive and respond.   Days with SMS, sometimes moments within a day, sporadically fluctuate.  When I am in a good place physically, I will challenge myself and work on the physical and mental “quirkings” of SMS.  Some days I am a victor.  Some days I concede with, “There will be another time.”  I refuse to be a victim.
There is no magical panacea for coping.  Coping is hard work and it is done on a daily basis.  For me, the first step (Outside of faith.) was acceptance, not acceptance in the guise of defeat, but acceptance in the thought mode, “What can I do about this?”

I love my family.  It has taken generous amounts of faith, love, humor, candor, and communication to make our life work.

I like the opening quotation to “My Story,” my personal analogy drawn between SMS, destruction, ashes, and hope.  I view the onslaught of SMS as a catastrophic fire that has destroyed my home. (My life.)  I now need to become an adjuster.  I go in and assess the damage.  What is marred, but salvageable, I keep.  What is irrevocably destroyed, I let go.  I may not have what I had before, but I replace what has been lost with something new.  Reassess, readjust, reinvent, replace, redo.  Implementing a lot of “re,” I have reaped rewards.  In the smoky ruins of what I perceived my life to be, I discovered hope.

For now, Stiffman Syndrome is my partner for life.  (I want a divorce!)  I have made it a point to understand him and how he affects me.  Physically, I am in a better place than I was in the early years of diagnosis.  I feel like SMS is my evil, stalking shadow.  I am an unwilling hostage with his hand loosely clutching my throat while pointing a loaded gun to my head.  I understand SMS better, but I never know what stimulus will set him off, squeezing my throat just a little tighter while hoarsely whispering in my ear, “I am still here.”

Living with any chronic illness takes a lot of mental and physical fortitude.  I view a true champion as a physically-challenged individual who courageously faces life each day, more than a sports superstar or Olympic contender.  The effort is in every moment of the day.  There are no championship trophies or gold medals.  The glory is struggling into your socks by yourself.
  
In some ways, SMS has been a blessing.  I appreciate, anew, the miraculous intricacies of the human body.  I embrace life.  Before illness, I always took the future for granted. Illness has taught me tomorrow is not a guarantee for anyone.  It is a delusional illusion everyone assumes.  The moment is all anyone has.

My current condition is what I would term as “stable.”  Stability, to me, is achieving a tolerable plateau.  I am not in a rapidly descending progression.   I will still have SMS moments or days, but my quality of life has greatly improved.  I was a participant in the NIH Stiff Person study.  My hope was to collectively help the other participants and research physicians find answers to the many unanswered questions about this strange and rare illness.
Retrospect is always 20/20 in clarity, but life is lived forward - in spite of.  I still breathe!  

​​Copyright 2004​​                                                                                                                                               

​MY STORY II



​You don’t think you’ll live past it and you don’t really.  The person you were is gone.  But the half of you that’s still alive wakes up one day and takes over again. 
​​

~ Barbara Kingsolver ~ Animal Dreams 


  1. Sunset Dream
    Sunset Dream
    Do not dwell in the past, do not dream of the future, concentrate the mind on the present moment. Buddha
  2. Soar
    Soar
    There is an eagle in me that wants to soar, and there is a hippopotamus in me that wants to wallow in the mud. Carl Sandburg
  3. Inspiration
    Inspiration
    My inspiration comes from my real life experiences. Lilly Singh
  4. Dock Sunset
    Dock Sunset
    Keep looking up! I learn from the past, dream about the future and look up. There's nothing like a beautiful sunset to end a healthy day. Rachel Boston