Tag Archives: DBS

February 2, 2014

One woman that did!

Today I participated in Cycle for Survival and due to low participation on my team I ended up cycling for 2 hours.  For those 2 hours I smiled in Jen’s memory, cycled harder and was grateful to be inspired by one woman that wanted to raise a cure for cancer.  She hasn’t stopped dancing in all of our souls and her legacy carries on annually at Equinox clubs worldwide.  By hour 2, I started thinking was this something I can do, could I Carrie Siu Butt take a disease and try to make it become more prominent, raise more awareness?  I think about this all the time, has Dystonia been my calling to help others? to inspire others?  A friend of mine told her daughter about me and she said see – Carrie is a miracle.  I am!  I have been through many life changes but the one thing that is constant is that Dystonia has been with me for 27 years of my life.  As I embark to celebrate my 8th year of DBS this year, I am thinking how to use my good fortune to spread the word – still through running, but is there more I can do? Write a book? Speak at engagements? I need to educate the future generations who may get this gene, that it is not a life sentence, it is not the end of who you are…but the beginning of a different journey…a special one…we are all special in our own way inside and out.  

To Jen, wherever you may be – I danced for you and with you today!  This world misses you but we are so happy to have you in our hearts at least once a year if not daily!

January 29, 2014

Guilt, Forgiveness, DBS

After spending a very long day in LA today, I got to the airport and had to wait for about 5 minutes for a female assist.  As the minutes went by, the more frustrated and cranky I got,  Then when she came over she asked “Do you know the procedure?” to which I begrudgingly answered it’s been eight years, yes I know the procedure.  And because I was already annoyed, I looked up to seeing three TSA agents staring as I got my pat down which made me really angry.  I started to get really pissed and then started to feel terrible guilt.  Why am I getting angry at a situation when the device which has given me life is causing the situation?  

Then I realized I was being stupid, I was being ungrateful for the luck I had to have had such a miraculous outcome…I should be proud of my 8 years of pat downs….it has been the gift for helping me run for those that can’t, it has been the gift that has taken me paddleboarding, snowboarding, skiing, snorkeling; it has given me the greatest gift to live life fearlessly.  So as I forgive myself for being mad at having to get a pat down, I am proud that I have not taken my second life for granted, that I try new things but most importantly that I raise awareness for those of us that can’t run or walk!  Dystonia has been my life lesson and in a moment like today I realized it has been my greatest gift as well!


December 27, 2013

Final Blog…wow, what a year!

I am not sure this blog will do 2013 justice but here goes!  My year was full of twists, turns and unexpected surprises and learnings. From January 1st this year, I felt the year was an upward battle with no end in sight.  I started the year of with news which was so unexpected that I didn’t know what the year was to bring….two weeks later, I found out the most precious thing to me my DBS was fooling me for months…I found out I had an open circuit and that I also had to replace the battery. I still remember that day vividly opening my eyes and seeing light, after feeling so lost and dark for so long.  So Lesson #1listen and follow what your body is telling you, sometimes you just have to be your own advocate.  I am so happy I kept on fighting for myself and believing in myself, especially when other doctors told me nothing was wrong with me.

My dystonia has been something that I have always described as “the disease”.  Lesson #2Acceptance.  For the first time in my life I realized dystonia is just who I am, no different than having wrinkles or black hair.  It’s just me.  Part of Carrie.  I have finally come to accept my Dystonia and truly want to change the face of this disease.  As I reflect, I have used Dystonia as a crutch that I may have abused once or twice…but the reality is life gives us hills to climb dystonia or not…so this year I climbed and climbed and finally hit summit and learned how much I accept and love the person that is me.  So I have decided to keep on raising awareness and being very vocal about my Dystonia for the foreseeable future.

Three half marathons, 5 months.  Lesson #3 – Taking care of myself.  I have learned that running marathons or races don’t prove that I am a bad ass, I AM A BAD ASS.  I don’t need to push my dystonia or my DBS to feel like I have to prove anything.  For a while, I felt lost without an identity without being able to say I am training.  So now I have shifted to saying I am a runner and you know what – I am!  The after effects of running long distances are too much and I am happy those days are done….I am excited that I retired on top.

Final, but most important – Lesson #4 – Gratitude.  I had no idea the outpouring of love my friends would have for me this year.  My family has been truly supportive and my friends nothing short of amazing.  I am always shocked at the amount of money I have raised for research to fund a cure.  My friends have been abundant with their wallets to support me in a cure for this disease.  I also realized I want to thank each and every set of eyeballs that read this blog.  Through this blog alone, I feel I educate more and more people globally about Dystonia.  So thank you for reading and sticking with me!

And as for 2013, thank you for the lessons and the learnings as hard and painful they may have been.  I am excited for the future and 2014.  These 4 lessons will be constantly with me and I am ready for a new year!  

See you in 2014!


December 12, 2013

Mumbles from Happy Feet here she comes…

So I now have had 3 more instances of people asking me if I am slurring or they aren’t understanding me…the hardest is when they are work calls…But the reality is I know one of my batteries is slowly dying its just a waiting game until the machine goes to the magical number so the insurance will pay for the surgery.  So unlike the Carrie of the past that ignores the signs, this time I am being different.  I meditate every morning so on those work calls when someone says you are slurring I don’t understand you, I take a breath in for 2 seconds and breathe out for 2 seconds and try and repeat myself slowly instead of get frustrated.  I bought a “hurricane” a steadier cane, this one has lights too :).  I just want to be ready so when I really get weebly wobbly I have a third leg and again not get frustrated.  Lastly, I got a handicapped parking pass just for when my gait really starts to fall rapidly I am not frustrated that I can’t find parking or have to walk too far.  So this time versus so many others, I am taking it slowly, resting, and not pushing myself.  It is a waiting game, it is inevitable.  But this time I am prepared.  I was a little sad tonight about the speech being such an issue for the last couple of days then I remembered I have to be thankful for the gift I am so lucky to have – the gift of being able to be active.  I am still a miracle, but like everything that is battery operated batteries have to be changed!  So I am going to be as calm and patient as I can be and I have to say I am proud that for the first time I accepted and am prepared!

December 4, 2013

To my sister…

Yet another battery change, yet another surgery!  You have taught me more than I ever knew and the older I get the more I learn how brave and strong you are.  You trusted the DBS before they even knew how DBS could affect Dystonia patients.  Many of us thank you for taking that step and the jump and paving the way for us.  You taught me how to accept.  You taught me how to embrace.  I may not say it enough but thank you!  Many of us thank you, I always get excited when people write in to the blog and say your sister is amazing…so on behalf of all of us- thank you!! you truly are an inspiration and a risk taker!  Good luck tomorrow and we all know you are going to kick butt!  I love you so much, thank you for being my constant inspiration!



November 30, 2013


I had a way longer drive than I expected in the car today and my mind started to wander and finally it came back to here…my blog…I was thinking what lessons did I learn this month?  As most people know I always like to reflect about lessons learned and many come to mind but first and foremost – I am amazing.  I am awesome.  That simple.  I learned that lesson a little bit of the hard way but I get it now….

So November has been interesting I felt like I went from hero to zero..I started out the first weekend with a bang running my last and final half marathon and killing it in 2 hours and 40 min and all the while I was running and enjoying every minute I kept on thinking please don’t let what I think is going to happen next happen….by 1pm, I felt that tremor in my right pinky and by 10pm that night full on tremor and completely twisted…And from that day on it kept on getting worse my worse nightmare…Slurring, eye issues and then finally the cane..but after a doctor’s visit I can say I am back to 90%…I am okay with that…I still wake up in the morning with tremors and try to shake them off as much as possible and still have a slight issue with the left but if 90% better is all I get then I am going to be grateful for that.

What did I learn?  If I can digress for a second…I am not a fan when people say “Dystonia sucks” ; it actually makes me sad.  I think of my dystonia as a gift and a little curse every now and then.  I have been able to take a disease which I got at an early age and with the miracle of science been given the gift of running.  I have so enjoyed running for those that can’t…or at least that was the point of this journey.  Little did I realize I would inspire those that can…I have friends from near and far that have said thank you for inspiring me to run my first 5K and someone even ran their first marathon after I ran Chicago.   So Dystonia, has been my gift that I give endlessly and around this world to try something whether disabled or abled…

The curse has been that I have tempted the DBS science once too many times, marathons, tough mudders…but I have learned all too well now that I am human too and that sometimes your disease can beat out the science…so why tempt fate?  Even this morning I was happy with my little run albeit a little slow and a little limpy on the left side but I didn’t give up…I set a 3 mile goal and I made it…Secret – I was so scared, it was my first run since the half marathon and I didn’t know if my legs were going to be able to do it…So I too suffer ups and downs, but it doesn’t “suck”…it’s part of my life’s journey.

I often forget how far I have come and the night before my doctor’s appointment on the plane ride down; I watched this video to remind myself that DBS has been more than just a success it was nothing short of a miracle.  I remember tears streaming down my face thinking did I screw it up? Did I push the stimulators too far…and luckily I know now I still have another chance.  So what did I learn?  I learned that I am amazing, that I took a frown and turned it upside down…Don’t give me wrong, I did throw myself a little siu pity party for a little, but I am realizing now that this is me – Carrie – I have black hair, a great sense of humor and Dystonia…wait you haven’t heard of that? how long do you have 🙂

And to my little sister who teaches me more and more about Dystonia everyday; good luck on Thursday and I know your battery change is going to go well!

November 22, 2013

Believing in miracles, having faith it will all work out…

So I am back up and walking again 🙂  As someone once said it’s going to be okay and it is. After some adjustments, I am somewhat back to normal but as I recall these adjustments take a while!  I am just happy that I am able to walk again, I am happy that I was able to go to the gym with my dad and walk with him on the treadmill.  

I am most happiest that Yoga, Pilates, short runs and Bootcamp are my new best friends.  Someone said to me you know you are going to get the itch again to run long distances and I can truly say I learned so much from this experience.  I learned 2 half marathons in 2 weeks is much for anybody able bodied or not.   What it took me almost 8 years to remember is that I truly have a gift so why I am abusing it?  My DBS is my super power to inspire others, so why would I give that away?

I will still keep on blogging because despite my blog being called “Run Carrie Run”; I will still be running short distances but most of all I learned that people read my blog to be inspired, to not give up, to keep on trying and to know that living with Dystonia is not a death sentence…and quite honestly there are days when I want to give up ….and then I read my blog and remind myself how far I have come and how much left I have to go…So as my new saying goes life is not a sprint it’s a 10K and I am truly, truly lucky that things are slowly getting better and hoping to be 100% soon!  And I will still call myself a runner, just a retired one! 

Thank you everyone for helping me through the last several days!