Stiff Person Syndrome ~ Living Forward. I have lived 28+ years with SPS. Informative links, media stories, my personal account. "awareness, knowledge, hope" <title/> <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



TRIBUTES

At times our own light goes out and is rekindled by a spark from another person.
Each of us has cause to think with deep gratitude of those who have lighted the flame within us.
~ Albert Schweitzer ~




I lovingly acknowledge my family. I am blessed to share my life with those who freely give love, joy, and acceptance.  I embrace the miracles of my children, my greatest blessings in life.  I am proud to be a grandmother.  Life is wonderfully full.  



For my friends, cherished and close to my heart, I thank you for being just who you are.  Individually, I have shared laughter, tears, memories, and love with each of you.  My life has been greatly enriched by your presence.



To a special individual who makes my heart smile -- seeing the real me with acceptance, understanding, and appreciation without reservations; you are beloved.  Thank you for your encouragement and support.



I wish to honor the memory of my second child.  My angel baby was born with a rare genetic neurological disorder, Werdnig-Hoffman, Spinal Muscular Atrophy I (SMA I).  During the time I was blessed to share my child's life, my little one taught me so much about courage, faith, living in the moment, and enjoying the simple.  These life lessons carried over to my SPS diagnosis a few years later.


I have sincere gratitude for Dr. Hiroshi Mitsumoto, my diagnostic neurologist.  My early years under his care were the instrumental foundation in helping me achieve the quality of life I have today.  May God bless the Lou Gehrig's Disease (ALS), research endeavors in which Dr. Mitsumoto has devoted his life.



Thank you, Dr. Dalakas and Dr. Rakocevic, for your time, effort, and the kindness you both have shown me during my trips to the National Institutes of Health (NIH.)  It was an honor and privilege to be a participant in the Cause, Development, and Progression of Stiff-Person Syndrome clinical trial.  Your research contributions have helped improve the quality of life for many.


I have a deep love and appreciation for the original SMS email support group.  A special thank you goes to Carlos for his years of maintaining the group.  Thank you to those who shared information, experiences, encouragement, and friendship through your email postings.  You touched my heart, inspiring me and many others.



With loving appreciation, I thank my medical team for their expertise, care, and friendship: my GP, neurologist, endocrinologist and  a few others.  You are greatly valued.



In recognition of a special lady, Stephanie.  Your profession evolved into a supportive and personal friendship to me and others.



"Death leaves a heartache no one can heal; love leaves a memory no one can steal"
~From an Irish headstone~



In loving remembrance of those who have died from Stiff Person Syndrome.  Your flames of inspiration and courage will burn forever as memories in my heart.​​



(Dedicated to all my heroes.) 

Wind Beneath My Wings
Did you ever know that you're my hero,
and everything I would like to be?
I can fly higher than an eagle,
for you are the Wind Beneath My Wings.
~Bette Midler~


We are, each of us angels with only one wing; and can only fly by embracing one another...
~ Lucianao De Cresenzo 




“Thou wilt keep him in perfect peace whose mind is stayed on thee; because he trusteth in thee.” 
Isaiah 26:3

I humbly owe everything to God.  He gives me peace, comfort, courage, and strength when my own heart is lacking.  I thank God for His love, daily blessings, the gift of my life, and the promise of eternity through His son, my Savior, Jesus Christ.