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.
You can edit text on your website by double clicking on a text box on your website. Alternatively, when you select a text box a settings menu will appear. Selecting 'Edit Text' from this menu will also allow you to edit the text within this text box. Remember to keep your wording friendly, approachable and easy to understand as if you were talking to your customer
JOHNS CLUB
Welcome to my site! 

My name is Debbie.  2017 will be the 23rd 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 Information was limited to a handful of article printouts from outdated medical journals.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 experiences.    

Experiencing an ocean sunrise, the day teasingly unfolded with the cinematic splendor of a goosebump blockbuster.  The sun split the clouds with the dazzling brilliance of promise, a new beginning -- hope.  
 
In my header photograph, there is a lone paddle boarder setting out for a 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.

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.

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 28+ 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, 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







"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


Button