STIFF PERSON SYNDROME - ​​L IVING FORWARD

​awareness, knowledge, hope

​​
"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 
​​

Welcome!

My name is Debbie.  2019 is the 25th 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 my 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 Information was limited to a handful of article printouts from outdated medical journals.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 life experiences.

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

I provide some information for a general layperson understanding of the syndrome.  SPS has variants, is individual as to severity, triggers, and beneficial response to medications and treatments.  I am not medically qualified to give individual medical advice, only share my personal experiences.

In my header photograph, there is a lone paddle boarder setting out for a sunrise ride.  Paddling against the deep dark waves, he dared the mystery of unknowns for the thrill of a ride.  Always, he paddled toward the sun.  The sun split the clouds with the dazzling brilliance of promise, a new day -- hope.  

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, faith, and hope, life can still be one thrill of a ride.

Life goes on.  Now I have 29+ years of living with and forward with SPS.  Life has not been easy, still has challenges, 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, most importantly -- hope.
 

Keep your face to the sunshine and you cannot see a shadow."  ~ Helen Keller


May today gift you with one memory worth reliving, one thing to bring a smile, the chance to share love, and the wisdom to recognize opportunity.

Debbie ♥  
 

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


awareness, knowledge, hope
"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


February 29, 2020
What is a Rare Disease?




STIFF PERSON SYNDROME - DEFINITION

Stiff-person syndrome (SPS) is a rare neurological disorder with features of an autoimmune disease.  SPS is characterized by fluctuating muscle rigidity in the trunk and limbs and a heightened sensitivity to stimuli such as noise, touch, and emotional distress, which can set off muscle spasms.  Abnormal postures, often hunched over and stiffened, are characteristic of the disorder.  People with SPS can be too disabled to walk or move, or they are afraid to leave the house because street noises, such as the sound of a horn, can trigger spasms and falls.  SPS affects twice as many women as men.   It is frequently associated with other autoimmune diseases such as diabetes, thyroiditis, vitiligo, and pernicious anemia.  Scientists don’t yet understand what causes SPS, but research indicates that it is the result of an autoimmune response gone awry in the brain and spinal cord.  The disorder is often misdiagnosed as Parkinson’s disease, multiple sclerosis, fibromyalgia, psychosomatic illness, or anxiety and phobia.  A definitive diagnosis can be made with a blood test that measures the level of glutamic acid decarboxylase (GAD) antibodies in the blood.  People with SPS have elevated levels of GAD, an antibody that works against an enzyme involved in the synthesis of an important neurotransmitter in the brain.







STIFF PERSON INFORMATION PAGE