Feb. 14, 2013
Posted at February 14, 2013 6:40 pm by Debbie Richardson

21 Responses to Stiff Person Syndrome: A Fight to the Finish Line

  1. Rhonda says:

    You’re an inspiration! Good luck with the 5K! I’ll be praying you cross that finish line–and with an ease you’ve not felt before. God bless!!!

  2. Shirley Mondeaux says:

    Good luck Debbie. So amazed that you are even trying!

    A fellow SPSr

    Shirley

  3. Missi says:

    Admiration, prayers and so so much love sent your way! I believe in you, you can and will do this!

  4. Bob Putkowski says:

    Debbie, I have heard such great things about you from Stef. This blog of yours is fantastic!

    You’ve reminded me of one of my favorite quotes –

    “In a gentle way, you can shake the world.”
    Ghandi

    Good luck on Saturday!

  5. Jim Heitzer says:

    Debbie, You will sure have my prayers and thoughts on Saturday. You will do this, like you accomplished everything else you set out to do.

    Prayers
    Jim

  6. Elis Regina says:

    Saúde e sorte para . Estou saindo da confusão de cinco dias devimunoglobulina que desta vez foram muito difíceis , ejoo, dores de cabeça . Mas os resultados já estão aparecendo, dentro de casa já estou até andando sem bengala.terminei a imunogobulina dia 10/02/2013. Estou muito feliz, felicidade para você também. Um abraço, Elis.

  7. Mike Turner says:

    I know you will do it!
    I expect you have your pole with you and off you will trot.

  8. Cathy says:

    Good luck Deb. Will be praying for you. What a feat to undertake!

  9. I wish to thank everyone for the well wishes, encouragement, & prayer. Many of you I know personally. Each of you has a special place in my heart. For my new friends of encouragement, thank you for taking the time to write.

    Tomorrow I will share the outcome of the 5K in this forum. It is a blessing just to try. :)

    May God bless.

    I will be sharing future updates on my blog:
    http://chronichaos.wordpress.com/

  10. I wish to share my gratitude for NORD and the outreach of Rare Disease Day. My thoughts are with the Stiff Person Syndrome community & with anyone who lives with a rare diagnosis.

  11. Vincent says:

    You sound like a driven person. I’ve never had much of a drive to succeed in life in the conventional fashion and yet now I still have difficulty forcing myself to take it easy when I begin to reach the limits my chronic pain and fatigue put on me so I can’t imagine what it’s like for you being as driven as you are. I’ll tell you what I often tell myself: Just do what you can.

  12. PattyO says:

    Debbie: by now you are wrapped in the blanket of the thrill of the hunt, the pride of accomplishment (because, as an SPS’r, you fully understand that even entering this journey was an accomplishment), and hopefully the shiny aluminum aka astronaut blanket they give to all the runners as they cross the finish line. Perhaps you even have a medal or a ribbon — or better yet, — a T-shirt that say’s “DEBBIE’S RUN FOR FUN…because she can…and because she did.” Thanks for running for us all – as a long time marathoner I miss the wind in my face and the rain on my shoulder, climbing the hills in tears and flying down them ecstatic in triumph. For the next few weeks I need to spend my days in bed (long explanation), but I realize I am not in bed….because perhaps this morning I was with you inside the stroller, enjoying the fun run. We ran because we could – and you did. xx Cheers from New Jersey.
    “… THE RACE IS NOT TO THE SWIFT, NOR THE BATTLE TO THE STRONG, NOR FAVOR TO MEN OF SKILL; BUT TIME AND CHANCE HAPPEN TO THEM ALL.” ECCLESIASTES 9:11

  13. Debbie,

    Thank you for being such an inspiration to all of us!!!

    And I am so DELIGHTED and PROUD that we’ve gotten to know each other!

    In follow-up to Vincent’s very sensitive post (above) — you absolutely did do what you could do!!!!

    (I have a tiny bit of insider knowledge about Deb’s efforts here — none of it was easy — not one split second of it. She moved right past the fear!)

    Debbie is one of those people who just refuses to take “no” for an answer!!!

    We’ll post more about this on NORD’s regular Face Book page and on our special Rare Disease Day Face Book page — so that you, Debbie, can provide inspiration to others who struggle with rare conditions.

    Woman OF Valor here!!!!!!

    God bless you!

    Stef

  14. Peg Lloyd says:

    Like there was any doubt in my mind that you would fail! Now write your story so anyone with an adversity or challenge in their life can gain from your insights and strength.
    Congratulations and we will meet soon…your sister in SPS land.

  15. Vincent, thank you for addressing how much we wish to do and how our physical limitations, pain and fatigue, will dominate. It is hard to pace our mind with our body, come to a balance between what was and is. Thank you.

    PattyO, I am wrapped in the blanket of your warm wishes. Thank you for understanding. I took so much “could” for granted before diagnosis, appreciate every opportunity. I will keep you in my thoughts and heart for better days. Some strides for one who understands the thrill.

    Stef, always. There aren’t any words.

    Peg, thank you for your encouragement and constant reminders of where to focus. Love you!

  16. I finished and did well! It meant so much to me, from my own personal journey, to those who share this battle with me. The physical symptoms are documented in articles and can be brutally vicious.

    The emotional issues in dealing with Stiff Person Syndrome do not belong to just SPS. They are issues everyone who is affected with a rare disease lives and copes with every day… one of the most difficult struggles.

    Rare Disease Day is when we can come together as a community, share our trials, but hopefully enlighten an uninformed world. We are an amazing group of people and I am proud of us — what we endure, what we overcome, and what we give one another: encouragement, inspiration, and hope.

    With a thankful heart, I send my best. Always.

  17. Diane Spencer says:

    I have the same disease and so excited for something to be happening on here for our disease. You have no idea how we are so excited for you. Cheers, Diane Spencer

    • Diane Spencer says:

      I am also posting this for everyone to see that are my friends in the USA. Thank you for inspiring us all to never give up.

  18. Hello, All!

    Here’s some follow-up about Debbie and her 5K race, which took place on February 17th.
    Debbie did fantastically!!!
    She ran through all her pain and fears — with an official finish time of 37 minutes, 10 seconds!!
    Deb took this on as a challenge for herself — she is doing whatever she finds possible to prevent stiff person syndrome(SPS)from defining her.
    A major inspiration for Deb’s participation in this 5K is her friend, Lulu Bucci — another brave and strong woman who is afflicted with an extremely rare variant of SPS.
    Thank you, Debbie, for sharing your inspirational story!!
    You can go to NORD’s Rare Disease Day FaceBook page and give Deb a “thumbs up” if you wish to — http://www.facebook.com/RareDiseaseDay.US?ref=hl

    • DIANE MCNEELY says:

      DEAR DEBBIE, YOU ARE AN INSPIRATION TO ALL OF SPS’ERS WHO THINK WE CAN’T DO SOMETHING…EVEN IF WE CAN’T KNOWING YOU DID IS SO WONDERFUL…WRITE SOON, OK? LOVE AND PRAYERS, DIANE

  19. _________ says:

    With each failing diet, I became more desperate to find the next promised miracle.

    So they join a gym or try out a new method to reach their goals.
    This is because the less you weigh the fewer calories it takes to function.

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