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

"I walk slowly, but I never walk backward." ~Abraham Lincoln

"Once we choose hope, everything is possible" ~Christopher Reeve


What is Stiff Person Syndrome?
Stiff Person Syndrome (SPS) is a rare disease of the nervous system. Progressively severe muscle stiffness typically develops in the spine and lower extremities; often beginning very subtly during a period of emotional stress. Most patients experience painful episodic muscle spasms that are triggered by sudden stimuli. An auto-immune component is typical and patients often have other auto-immune disorders. Symptoms usually begin in the mid-forties. The severe muscle stiff-ness of SPS responds to benzodiazepines. Testing with an EMG (electro-myogram) needle will assist the diagnosis and testing the blood for anti-GAD (glutamic acid decarboxylase) antibodies (if present at very high levels) will confirm the diagnosis in the majority of people with SPS.
SPS is extremely rare. Although it is not possible to determine the exact prevalence, it may occur in fewer that 1 per million. The disease is more common in women (the ratio is 2 women for every man effected). There is no predilection for any race or ethnic group. There is an association with diabetes and perhaps over half of patients with SPS have or will develop diabetes. Other autoimmune diseases have been found in association with SPS, for example: thyroid disease and vitiligo. There is an increased incidence of epilepsy. An important but especially rare variant of SPS is associated with breast or lung cancer. Characterized by the production of antibodies to amphiphysin, this variant of SPS has certain features that distinguish it from the more typical SPS with GAD antibodies.

Dr. Scott Newsome Explains Stiff Person Syndrome

This is the introduction, a brief explanation.  To read the complete article visit:

Johns Hopkins Medicine

"Let us not look back in anger or forward in fear, but around in awareness."
~James Thurber~

"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 


  1. Ocean Sunrise
"I am determined to be cheerful and happy in whatever situation I may find myself. For I have learned that the greater part of our misery or unhappiness is determined not by our circumstance but by our disposition. ~Martha Washington
"Life isn't about waiting for the storm to pass; it is about learning to dance in the rain."  ~Unknown

Welcome to my site

"Hope is being able to see that there is light despite all of the darkness."  ~ Desmond Tutu
My name is Debbie.  2016 will be the 22nd anniversary of my Stiff Person Syndrome diagnosis, following four-five years of progressive symptoms.  SPS is a devastating disorder -- life-shattering and life-altering.  My diagnosis came with the possible prognosis of "sudden death" due to respiratory failure.  I was afraid, lonely, and hungry for information.
 The six years following diagnosis were pre Internet. Information was limited to a handful of article printouts from outdated medical journals.  Reading through a few meager pages of syndrome description, I searched for one paragraph of hope.  My loneliness yearned for something/someone personal to which I could relate...information, personal understanding, hope. I created my first website in 2004 as a caring outreach to others -- to inform, encourage, and offer understanding from sharing my personal experiences.    

Photography has become one of my acquired hobbies.  I set out to experience an ocean sunrise, the awakening of a new day.  The day teasingly unfolded with the cinematic splendor of a goosebump blockbuster.  The sun split the clouds with the dazzling brilliance of promise, a fresh beginning -- hope.  
In my header photograph, there is a lone paddle boarder setting out for a ride.  Paddling against the deep dark waves, he dares the mystery of unknowns for the thrill of a ride.  Always, he paddled toward the sun.

My thoughts paralleled to my life with Stiff Person Syndrome.  Living within a challenged body, everyday is cumbersome paddling against a tide of unknowns in unchartered waters.  I have learned to keep living forward with my face to the sun. With effort and hope, life can still be one thrill of a ride.

People assume because I have lived most of my adult life with the syndrome, coping is no longer an issue for me -- a very ignorant conclusion.  I still have moments of sadness, mourn loss, fear for the future.  Coping is NEVER a destination but a daily journey.

Life goes on.  Now I have 25+ years of living with and forward with SPS.  Life has not been easy, but it has been rewarding and full in many unimaginable ways -- a thrill of a ride.  

It is my desire for you to find an answer, understanding, and maybe a smile in my website.
"Keep your face to the sunshine and you cannot see a shadow."  ~ Helen Keller



This is my wish for you: Comfort on difficult days, smiles when sadness intrudes, rainbows to follow the clouds, laughter to kiss your lips, sunsets to warm your heart, hugs when spirits sag, beauty for your eyes to see, friendships to brighten your being, faith so that you can believe, confidence for when you doubt, courage to know yourself, patience to accept the truth, Love to complete your life.”

~ Ralph Waldo Emerson


**Thank you for visiting my homepage!  I am in the process of revising my website. I appreciate your patience during this update.**
If you can't fly then run, if you can't run then walk, if you can't walk then crawl, but whatever you do you have to keep moving forward.” ~Martin Luther King
"The journey of a thousand miles begins with one step." ~Lao Tzu
"I shouldn't say I'm looking forward to leading a normal life, because I don't know what normal is." 
~Martina Navratilova

did you know?

  • Stiff Person Syndrome (SPS) is also known as Stiffman Syndrome (SMS), or Moersch Woltman.
  • There are Variants of Stiff Person Syndrome.
  • Stiff Person is rare, affecting one in one million.
  • RARE Diseases: Facts and Statistics

    >  There are approximately 7,000 different types of rare diseases and disorders, with more being discovered each day.

    >  30 million people in the United States are living with rare diseases. This equates to 1 in 10 Americans or 10% of the U.S. population.

    >  If all of the people with rare diseases lived in one country,  it would be the world’s 3rd most populous country.  In the United States, a condition is considered “rare” if it affects fewer than 200,000 persons combined in a particular rare disease group.

    >  Approximately 50% of the people affected by rare diseases are children.

    >  According to the Kakkis EveryLife Foundation, 95% of rare diseases have not one single FDA approved drug treatment.  Approximately 50% of rare diseases do not have a disease specific foundation supporting or researching their rare disease

    >  During the first 25 years of the Orphan Drug Act (passed in 1983), only 326 new drugs were approved by the FDA and brought to market for all rare disease patients combined.

"It is in moments of illness that we are compelled to recognize that we live not alone but chained to a creature of a different kingdom, whole worlds apart, who has no knowledge of us and by whom it is impossible to make ourselves understood: our body."  ~ Marcel Proust

*Disclaimer.  This is a personal website.  I am not affiliated with any person, facility, cause, or physician.  I do not endorse any person, cause, facility, physician, or treatment.  The medical information on this website is taken from peer-reviewed documents.  I am not qualified to give any medical advice.  The content of this website is original and from my own personal experiences.  Any similarities is coincindental.