Here is my feature story on Good News Network. I’m thankful for this opportunity, as it helps raise awareness for SDR. This is so exciting! Please share and help spread the good news about SDR. Thank you for your support. :-)
28 May 2015 Leave a comment
25 Mar 2015 Leave a comment
Thank you to Daily Concepts for featuring my story in honor of National Cerebral Palsy Day! I continue to share my story so that more adults adults and children can benefit from SDR. I celebrate my two-year SDR Anniversary on Sunday! Thank you, Dr. Park!
19 Sep 2014 2 Comments
in Huffington Post Articles, Writing Tags: Carson Daly, celebrities, childless by choice, childless couples, childless not by choice, childless women, chlidless, feminism, friends, Friends tv show, Gloria Steinem, Jennifer Aniston, Makers Conference, motherhood, self worth, stigma, the single life, Today Show, woman, women
My article for The Huffington Post: A Childless Woman’s Thank You to Jennifer Aniston really struck a chord – 7,000 likes and counting!
Please share the link on social media. Click on the link to post your comment below the article. Thanks!
18 Sep 2014 Leave a comment
in Huffington Post Articles, Writing Tags: anxiety, boundaries, Codependency, dancing, Dead Poets Society, death, depression, friendships, HuffPost Healthy Living, laughter, loneliness, loss, mental health, mental illness, mental illness stigma, moving on, Narcissicm, Narcissistic Personality Disorder, National Suicide Prevention Lifeline, Robin Williams, SDR, suicide, The Huffington Post, Toastmasters, toxic relationships, trauma, volunteering
Depression is real. My article for The Huffington Post: Depression Is No Laughing Matter is my personal story.
Please share the link on social media and comment on it (by clicking on the link and posting below the article). Let’s get rid of the stigma surrounding mental illness. If you need help, reach out. You are not alone.
If you are in crisis, visit the National Suicide Prevention Helpline or call 1-800-273-8255 24/7.
25 Jun 2014 Leave a comment
I dedicated a poem to Michael Jackson. I can’t believe it’s been five years since his untimely death. RIP, MJ. Your music will live on forever.
17 Jun 2014 2 Comments
I’m in the newspaper! Be sure to read about my adventures at
09 Jun 2014 5 Comments
in Selective Dorsal Rhizotomy (SDR) Surgery, Writing Tags: Albert Einstein, balance, Baldwin City Signal, baldwin iCan Bike, bicycle, bike camp, Happy Birthday, iCan Bike Camp, icanshine.org, Jim Valvano, life, moving
“Life is like riding a bicycle. To keep your balance, you must keep moving.” –Albert Einstein
Bike Camp Day 1: I turned 41 today! Thanks to my brother John and everyone at Baldwin iCan Bike for making me feel special. The staff and volunteers sang Happy Birthday and gave me a beautiful bouquet of sunflowers!
If I learn…or should I say WHEN I learn to ride a two-wheel bike I may cry. I’m not sure I can hold it in! Being able to do something that is a right of passage for so many feels surreal. I hope I get the hang of it (when it starts getting harder)! I need help on and off the bike because I can’t lift my foot high enough. Thank God for my spotters. They made sure I didn’t fall. I would’ve gone down a few times without them.
Day Two Today was tough! There aren’t adequate words to describe how hard it is to do something your brain and body don’t naturally get. I pushed through and am more sore than yesterday. The tandem ride with Clayton was so much fun!
Day Three: Bruising & Cruising After getting a new bike (the roller bike kept leaning, making it harder for me to learn, since I also tend to lean my body) and falling a couple of times (not fun but I got right back on), I was able to graduate to a regular two-wheel bike. I didn’t think that would happen today! I did great! I went on another tandem ride so Clayton could feel/see how I was riding and give me feedback. Note to self: holding the handlebars too tight makes everything harder! If I keep getting better, I can ride outside in the parking lot. Some kids got to do that today. I’m sore and tired every day. I hope they don’t have to wheel me out on a stretcher on Friday!
Day Four: Overcoming Fears & Tears of JOY! I started out struggling again. I couldn’t figure out why I kept leaning my body and/or hips. Clayton, the bike whisperer, worked with me and found the solution. All it took was a tap on my hip every time I leaned. After practicing with Dawn and Rachel, this happened:
I cried after this ride. It was so emotional for me. I had to take a break, hug my brother and wipe the tears. Clayton, Dawn and Rachel hugged me. They were so happy to see me riding on my own! And, a reporter interviewed me for a story in the Baldwin City Signal. :-)
Graduation Day: Spills & Thrills! Bike camp was full of thoughts (“I can’t do this” or “I’m not getting it” crept in) and emotions, both of which I tried to keep to myself. I wanted to trust the process as much as possible. When I had no idea what I was doing, I kept going. When I got frustrated and questioned if I could do this, I kept going. When my brain and body were taxed to the max (I have the bruises to prove it), I kept going. When Hannah walked me to my two-wheel bike, despite feeling scared, I hopped on and kept going! When I gripped the steering wheel too tight — holding on for dear life — especially when I thought a crash was coming, I gradually learned to keep going. When I realized a lot of the riders were outside and I was inside, I kept going at my own pace. If I was ready, I’d be out there, too. I was happy for the kids. I knew I’d be okay if I didn’t progress to the parking lot by today. Thankfully, I caught on quickly. Clayton worked with me so I’d be ready to face the pavement. When I fell so hard it hurt, I kept on going when I DID NOT want to get on the bike. Lesson learned: KEEP GOING!
Whenever you need encouragement to continue on the road of life, remember the words of the late Jim Valvano: “I urge all of you to keep your dreams alive in spite of problems. Don’t give up, don’t ever give up.”
Thank you to everyone at Baldwin iCan Bike – the wonderful hosts Barb and Betsy, Clayton the bike whisperer, Hannah – and all the supportive volunteers who helped make riding a tw0-wheel bike a dream come true. The gift you give those of us with developmental and/or physical disabilities is priceless!
Riding a bike is a rite of passage many of us would never experience if it weren’t for your organization. Thanks for believing in and showing us that we CAN do what many believe is impossible. It IS possible! All it takes is a little creativity (the rollers are genius), dedication, kindness and, in my case – blood, sweat, and tears. I need a bike and some additional training before I’ll be able to ride on my own. Because of bike camp, I’ll never forget how great it feels to ride like the wind!
19 Apr 2014 Leave a comment
in News, Selective Dorsal Rhizotomy (SDR) Surgery Tags: benefits, Cerebral Palsy, CP, Daniel J. Vance, Disabiliities by Daniel J. Vance, disabilities, life-changing, news, newspaper, newspaper column, SDR, Selective Dorsal Rhizotomy, spasticity, St. Louis Children's Hospital
I am so thankful to be featured in today’s Disabilities by Daniel J. Vance newspaper column. Please share it to help raise awareness about selective dorsal rhiztotomy (SDR). The surgery changes lives! It helps everyone with cerebral palsy (each case is unique) who has it. There is no benefit to having spasticity.
29 Mar 2014 11 Comments
in News, Selective Dorsal Rhizotomy (SDR) Surgery Tags: baldwin iCan Bike, Cerebral Palsy, CP, daring, daring greatly, Dr. Park, gift, iCan Bike Camp, icanshine.org, impossible, life-changing, Nicole Luongo, Nicole Luongo YouTube, one year SDR anniversary, possibility, possible, SDR, SDR anniversary, SDR one year later, Selective Dorsal Rhizotomy, spasticity, surgery, Theodore Roosevelt, Theodore Roosevelt quote, YouTube
“It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming.” —Theodore Roosevelt
I had selective dorsal rhizotomy (SDR) surgery one year ago today! Words cannot express how I feel about this life-changing operation. I believe in it so much that I am now an advocate for the procedure – and will continue to be – by submitting my story to as many publications as possible. It wasn’t easy growing up with a physical disability everyone can see. I was bullied and teased. It wasn’t easy making friends. There were tears, lots of tears. I also got stared at a lot. And, when I volunteered at an elementary school, children often asked, “Why do you walk like that?”
Now that I’ve had SDR, the question that seems to be on the forefront of inquiring minds is, “What can you do now that you couldn’t do before?” I always say that the surgery wasn’t really about that for me, especially because I could do so much prior to it. But, what I could not do was walk – without people looking or staring – even for a brief moment. SDR changed that for me. Even though my gait has changed so dramatically, I still think people are staring. Thankfully, it may not be for the reasons that I think.
Has SDR allowed me to do do things I could not do before? YES! Sometimes, it’s the simple things, like being able to walk backward or bring my heels to my butt (post-workout stretch) without struggling. Or, being able to do something I never would attempt before the surgery – walking up and down stairs without holding on! This isn’t something I do all the time (only in controlled environments) because I still have CP. Sometimes my legs work the way I want, sometimes they don’t.
SDR gave me the gift of POSSIBILITY. Before SDR, I could not imagine what it would be like to walk normally. I accepted the fact that people (most often, children) would stare at me in public. It was one of the perks of having CP. Another perk was having tight muscles ALL the time. It didn’t matter how much exercised, did physical therapy or didn’t feel tight (it was so normal to me, I didn’t not know the difference), spasticity followed me everywhere. SDR changed that for me, too. I don’t have spasticity. IT’S GONE! I still have challenges that are, and always will be a part of having CP. I am truly thankful that getting stared at in public isn’t one of them anymore.
Thank you, Dr. Park! You made it possible for me to do the impossible. People with cerebral palsy want to be like everyone else. SDR has allowed me to be as much like other people as possible. This is why I am so passionate about SDR. Every person with CP should be made aware of this life-changing surgery. We all deserve the chance to have the best life possible. SDR CHANGES LIVES!
What’s next? I will learn how to ride a two-wheel bike at Baldwin iCan Bike on my 41st birthday in June.
25 Mar 2014 Leave a comment
Originally posted on Life Once Dreamt:
***Nicole Luongo is sharing her dream changing moment this week and I am so honored to share her story with you. With this being National Cerebral Palsy Awareness Day, this post is coming to you a day early and once you read Nicole’s story you will understand why. To tell you she is determined would be a gross understatement. She is magnificent in so many ways and I am so happy she is a part of the Dream Changer series. Nicole is such an inspiration to us all and I hope you enjoy her beautiful words as much as I did.***
I came into this world the size of a baby chicken! I was born two and a half months premature, weighing less than three pounds. My mom noticed that I could not rest my feet flat of the floor. Lacking balance, I rarely took a step without holding onto…
View original 614 more words
25 Mar 2014 2 Comments
in Selective Dorsal Rhizotomy (SDR) Surgery, Writing Tags: Cerebral Palsy, Cerebral Palsy Awareness Day, CP, Dr. T.S. Park, dream changer, guest blog post, Lamisha Serf, Life Once Dreamt, SDR, Selective Dorsal Rhizotomy
March 25 is National Cerebral Palsy (CP) Awareness Day. Wear green to show your support! I took this picture after my workout. My socks have a bit of green in them! The word BRAVE (my word for 2014, painted beautifully by artist Shana Mattheis, is a reminder that everyone with CP is brave! We are capable, determined, and smart. CP does not define us!
In honor of National Cerebral Palsy Awareness Day, I wrote a guest blog post for Lamisha Serf’s Dream Changer series. I’m so happy to be a featured on this wonderful blog dedicated to helping women live our dreamiest lives. Thank you, Lamisha, for sharing my story with your readers. This will help raise awareness about selective dorsal rhizotomy (SDR).
20 Feb 2014 3 Comments
in News, Selective Dorsal Rhizotomy (SDR) Surgery Tags: Cerebral Palsy, CP, Dr. Park, Dr. T.S. Park, fundraiser, Fundrazr.com, Help Nicole's New Legs, https://fundrazr.com/campaigns/4OBp3, Mike Poole, MP Fitness, new legs, Nicole Luongo Fundrazr.com, Scotland, SDR, Selective Dorsal Rhizotomy, surgery, train, training, update
I have cerebral palsy. This is how I run almost eleven months after my Selective Dorsal Rhizotomy (SDR) surgery with Dr. TS Park on March 29, 2013. Note: I could run before SDR.
17 Feb 2014 1 Comment
We have our next fundraiser! We will be selling all kinds of bracelets, and keychains, anything made out of rainbow loom Rubberbands, in order to help raise money for Nicole so that she can go on a trip to help her learn how to use her.new legs to the best of their ability.
Anyone who is interested can send me how ever much they are willing to donate, and I will send you a bracelet back. Every little bit will help, so I ask that you all please attempt to send something, even if it’s just 2 dollars, it will bring us closer to our goal. Our goal is to raise $200 for Nicole over the next 6 week.
Share the Love!
15 Feb 2014 Leave a comment
I change the world every day by sharing my cerebral palsy story with as many people as possible. I want to create a non-profit organization to raise global awareness about Selective Dorsal Rhiztotomy (SDR) surgery so that adults and children with cerebral palsy know about this life-changing surgery. Many of us stumble upon the information as I did, thanks to Facebook!
I decided to apply for a B-School Scholarship with Marie Forleo. B-school would teach me how to support myself, continue to give back and GET PAID FOR IT. I don’t want to live on a limited income for the rest of my life!!
You can help increase my chances of winning by commenting on YouTube, sharing my video on Facebook and tweeting about it. All tweets must include the #winBSCHOOL hashtag and the link to http://joinbschool.com to be considered.
Thank you for your continued support in everything I do!
13 Feb 2014 Leave a comment
in News, Selective Dorsal Rhizotomy (SDR) Surgery Tags: Cerebral Palsy, fundraiser, Nicole Luongo, Nicole's New Legs - SDR Journey, Perthshire, Perthshire Daily News, Scotland, SDR, SDR surgery, Selective Dorsal Rhizotomy, Twitter
Thank you to the Perthshire Scotland Daily for featuring my story and sharing it on Twitter!
10 Feb 2014 2 Comments
in News, Writing Tags: Buy Bracelets for Bravery, Cerebral Palsy, CP, donation, donations, Dr. T.S. Park, fundraiser, Funrazr.com, Help Nicole Get New Legs, https://fundrazr.com/campaigns/4OBp3, Inspiration Loom, Inspiration Loom fundraiser, love, love poems, love poetry, Mike Poole, MP Fitness, Naked Desires, Nicole Luongo Fundrazr.com, Nicole's New Legs - SDR Journey, poetry book, Scotland, SDR, Selective Dorsal Rhizotomy, travel, U.K., United Kingdom, YouTube
“A good traveler has no fixed plans and is not intent on arriving. A journey of a thousand miles must begin with a single step.” –Lao Tzu
Here is the latest Selective Dorsal Rhizotomy (SDR) UPDATE:
Wow, can you believe it’s been nearly one year since my life-changing surgery? I’m excited to announce the next step of my SDR journey. I’m embarking on an SDR U.K. Adventure! In a few short months, I’ll be traveling to Perth, Scotland to receive specialized post-SDR training with Mike Poole at MP Fitness! Watch the video and you will understand why Mike’s specialized training (recommended by my neurosurgeon, Dr. T.S. Park) is sought out by SDR families around the world. At 40 (I will turn 41 during my trip), I will be Mike’s oldest patient to date by far. There really isn’t anything like this available in the United States – certainly not for adults! So, when this incredible opportunity came my way, I had to say YES! I want to learn how to use my new legs to their maximum potential. This is exactly what Mike teaches his clients! This trip is only possible because of donations to my Nicole’s New Legs fundraiser and Mike’s generosity. I need to raise more money for accommodations, food, etc. during my two week stay in Scotland. The training is two hours a day for ten days, not including weekends.
I am passionate about spreading the word and raising global awareness for this life-changing surgery. Since my SDR last March, I’ve shared my story with many people. I’ve answered e-mails, offered words of encouragement and support and continue to do so. I even tweeted Ashton Kutcher (his brother has cerebral palsy) asking for his help to raise awareness! Traveling from America to the United Kingdom will add another dimension to my story, making it possible to reach so many more who may benefit from SDR. I also want to meet many SDR families (their children inspired me to go for SDR) who have supported me along the way. So many wonderful people have offered to host me, drive me to other cities, etc. Unfortunately, everyone lives in different parts of the U.K.
There are FOUR ways you can help:
1. Donate to my Help Nicole Nicole’s New Legs Train in Scotland fundraiser. A percentage from every donation goes to Fundrazr.com.
2. Contact me if you can help get an airline to donate miles OR if you want to donate frequent flyer miles.
4. Please SHARE and RE-TWEET this post as often as possible!
Thank you for supporting my SDR journey!
Update: I wasn’t able to train in Scotland. I am no longer fundraising for this trip.
10 Jan 2014 Leave a comment
My guest post on Biggest Girl In The Ballroom. Please visit Stefanie’s blog. It’s great!
Originally posted on Biggest Girl In The Ballroom:
Hi there friends, Stef here! I’m super excited to share this guest blog post with you today. I have been fortunate enough to connect with Nicole Luongo, published poet, blogger, and dancer. She also happens to have Cerebral Palsy. She’s a pretty awesome human being. I discovered her because I’m always scouring the blogosphere for anything ballroom-related and I found her videos of her dancing. Reading her blog post I was touched and inspired. She’s overcome a lot and takes on life in a big way with gratitude, zest, and passion. We connected and decided to do guest blog posts for each other. I love getting the word out about inspiring ballroom dancers! So without further ado, I’ll let Nicole take it away:
“Disability is natural. We must stop believing that disabilities keep a person from doing something. Because that’s not true – having a disability doesn’t stop me…
View original 1,264 more words
09 Jan 2014 3 Comments
in Guest Posts, Poetry Tags: adore, advice, afraid, authentic, ballroom, ballroom competition, ballroom dancing, beautiful, Beautiful Blogger Award, beauty, Biggest Girl In The Ballroom, bliss, blog, blogosphere, body, breathtaking, burden, capable, Cerebral Palsy, challenge, character, chronicles, comfort zone, community, competition, connection, CP, dance, Dance Anyways, dance studio, dancing, different, example, excuses, exemplifies, exercising, facebook, fat, fearless, fly, free, friend, graceful, guest blog post, guest post, healthy, heart, heroes, hilarious, honored, hope, HopeMob, imagine, incredible, inspiration, journey, joy, life, light, limitations, limits, lovely, Mambo, meaningful, music, Nicole Luongo, nourishment, now, opportunity, overcome, pain, physical prowess, poet, poetry, possible, powerful, pretty, ready, resistance, sass, SDR, SDR surgery, Selective Dorsal Rhizotomy, sidelines, silence, sin, size, smitten, soul, sparkle, special, starve, story, strength, studio, sun, supportive, surgery, The Biggest Girl In The Ballroom, thin, touched, true, truth, try, Twitter, unlimited, voice, watch, weight loss, within, wonderful, writers, writing, Yulia Zagoruychenko, zest
Guest Post by Stefanie Lein
Hi! I’m Stefanie, otherwise known as the Biggest Girl In The Ballroom. I was fortunate enough to connect with Nicole and we’ve been conversation for a little while since we both love dancing. Plus it turns out we are both writers – and Nicole is a poet as well and I’m just starting to explore poetry. Anyways, we have a lot in common and I’m glad to have had the opportunity to get to know her a little bit better.
In our conversation we decided it’d be a good idea to do guest posts for each other’s blogs. I believe in community and absolutely adore connecting in a meaningful way with people who read my blog. It’s even more fun when they have a blog, too! So I like to get the word out about other great bloggers, other inspiring people, and build a supportive blogging environment, which is why I wanted to cross-promote with Nicole, especially, because I think it’s pretty obvious, she’s a pretty incredible human being.
I first found Nicole’s blog because I’m always scouring the blogosphere for anything ballroom dancing-related. In one post she wrote about dancing and even posted some videos of herself. I was instantly deeply touched and smitten! I love dancing, and to me, it is most beautiful when people dance because they love it. Nicole’s joy screamed at me from the video screen. And it was even more powerful to watch, from my perspective, because she has overcome so much. I mean, it’s apparent Nicole doesn’t move like most other people. But that’s not really what I saw as I watched her dance. I saw her beauty, her zest for life, her strength of character. It was, in a word, breathtaking.
I recently posted a link to Nicole’s blog and the videos of her dancing on my Facebook page and said she’s one of my dancing heroes, and that’s the truth. Nicole may not have the technique or physical prowess of Yulia Zagoruychenko (most of us don’t!), but instead she has something precious and special in just being her authentic self when she dances. In that sense, Nicole is unlimited. For certain her spirit has no limitations. And she even said so herself:
My SDR journey is teaching me to stop believing in limits – those imposed by myself or others. All of us are capable of much more than we imagine.
This is inspiring! Nicole is an inspiration to people like me. We all do have certain limitations, that much is true – but all too often we let our limits today prevent us from reaching further so that we have larger, different, more expansive limitations tomorrow. We so often give up and give in at the first sign of resistance, the first inch out of our comfort zone. I admit that for myself I’ve come up against many limitations with my dancing, but the truth is that the vast majority of them have been self-imposed mental projections. I’ve also discovered what Nicole attests; we are all of us more capable of much more than we imagine.
I love the fact that Nicole dances. I love the fact that she gets out there when so many people opt to sit on the sidelines with all sorts of excuses, again, most of them only real in their head. And here is this woman who, if anyone was to have a valid justification for not dancing, it would be she, and yet, there she goes, dancing the Mambo with sass! She lives her life as an example of what’s possible instead of settling for anything less. She explains:
I dance because I love it. I dance because I CAN. I sat on the sidelines of life for many years. I rarely got asked to dance. Now, after my surgery, I’m going to dance like EVERYBODY is watching! If I mess up – “SO WHAT, WHO CARES!”
Nicole exemplifies what I wrote about in a recent poem on my blog. I call it, “Dance Anyways.”
I don’t know how. I will look dumb.
I’m not the right size, not a size one.
My legs are too thick, like trunks on a tree,
and my body is round, there’s no hope for me.
I am afraid to do it myself, though I do love to see you fly.
It’s better I sit back and watch than to give this thing a try.
You are so beautiful and lovely to see.
I wish I could be like you, but clearly I’m just me.
The voice in side me says I’m not enough –
I’m just a dud.
My heart wants to dance, that much is true,
but I know I can’t do it, I’m nothing compared to you.
How can you know that if you don’t try?
Why halt your soul if it wants to fly?
This is the saddest story to tell,
of someone who died inside when their spirit was quelled.
Oh sure, you can see them stomping around,
but they have no sparkle, like zombies dug from the ground.
Their eyes have no light, inside they wither,
under the burden of woulda, coulda, shoulda, it’s no pretty picture.
Don’t cow yourself in, you deserve better.
The world has enough zombies, it’s your passion that matters.
If I could give one slice of advice it would be only this:
Dance your bliss!
Dance when you are fat, dance when you are thin.
Dance when the music is playing and you can’t hold it in.
Dance with a partner, dance with a friend,
dance with your dog or a room full of men!
Dance in your kitchen, barefoot and free,
or dance in the studio with legwarmers to your knees.
Dance in silence and dance in the rain.
Dance when you feel wonderful and when you feel pain.
I said it before and I’ll say it again,
For there is no greater sin,
than to deny your soul nourishment
and to starve from within.
There may be a million reasons NOT to dance under the sun,
but the reason TO dance, there is only one.
If you want to dance, it’s enough that it’s in your heart,
In truth that is the one reason to start.
It doesn’t have to make sense.
Dance your bliss!
I want to thank Nicole for taking me up on the offer to write mutual guest blog posts. I’m honored to get the opportunity to connect and share with such a lovely, powerful, fearless woman. Thanks for inspiring me, Nicole! And keep dancing. Oh, and good luck with the bike riding! I can’t wait to hear all about this next challenge that you are going to overcome, and a dream come true for you. I celebrate you for taking on life with passion and courage and being an example to so many of us.
Your Friend, Stefanie (AKA The Biggest Girl In The Ballroom)
Stefanie began dancing at the age of five but gave it up after high school to become a “responsible adult.” She gained a lot of weight and was pretty unhappy. One day she discovered ballroom dancing and something magical happened; Stefanie began coming back to life, finding passion, joy, and connection. She also started getting healthier and has dropped over 85 pounds so far. She competes in ballroom competitions and chronicles her journey with her hilarious and wonderful Bulgarian instructor, Ivan, on her blog, The Biggest Girl In The Ballroom.
You can follow Stefanie on Facebook: Biggest Girl In The Ballroom.
Or Twitter: loveablestef.
31 Dec 2013 4 Comments
in News, Writing Tags: Cerebral Palsy, dreams, fundraiser, Fundrazr.com, goals, Help Nicole Get New Legs, Nicole's New Legs - SDR Journey, review, SDR, Selective Dorsal Rhizotomy, thank you, year in review
Wow, what a year this has been! Thanks to everyone who followed, supported and visited my blog in 2013. I appreciate those of you who took the time to post comments (a special thanks to the top five commenters; you ROCK!), wishing me well after my surgery and encouraging me to keep moving forward – one step at a time. Thank you so much for donating to my Fundrazr campaign and sharing the link. You made the journey to get new legs easier and less stressful. Your support meant the world to me and touched my heart in inexplicable ways.
I look forward to global blogging opportunities and many more connections with people around the world. My goal is to share my story with as many people with cerebral palsy as possible and raising awareness about Selective Dorsal Rhizotomy (SDR). May 2014 bring you more of what your heart desires. Keep reaching for your dreams. There is no limit to what you can achieve! The next goal I will work on is learning to ride a two-wheel bike. Stay tuned for updates!
The WordPress.com stats helper monkeys prepared a 2013 annual report for this blog.
Here’s an excerpt:
A New York City subway train holds 1,200 people. This blog was viewed about 3,900 times in 2013. If it were a NYC subway train, it would take about 3 trips to carry that many people.
29 Dec 2013 2 Comments
Today marks nine months since my Selective Dorsal Rhiztotomy (SDR) surgery with Dr. T.S. Park. Here is a short video I took on Christmas day:
I am so thankful for all the blessings (opportunities, people, etc.) that have come into my life as a result of having this surgery. Thank you to everyone who has supported my journey to get new legs. Starting next month, I will start to learn how to ride a two wheel bike. Wish me luck! More of this or something better in 2014!
02 Oct 2013 Leave a comment
Today is World Cerebral Palsy Day. Wear green to show your support.
Here is some helpful information about CP, the different types (I have spastic diplegia), etc. People with CP are bright, capable individuals with dreams and goals. Join me in celebrating them today.
Thank you to everyone who accepts and loves me just the way I am. It’s been six months since my SDR surgery. I’m doing great! I haven’t shared the fundraiser link in awhile because I do not believe in asking for more than I need. I’m still waiting for all the bills to come in. So far, some of the contributions (I still have money in the SDR fund) have allowed me to pay for airline tickets, hotel accommodations/food in St. Louis and medical bills. I would not have been able to do this without donations from family and friends.
29 Sep 2013 15 Comments
in News, Writing Tags: A Step Above, A Step Above Dance Studio, anniversary, ballroom dancing, Cerebral Palsy, CP, dance, dance studio, dancing, Dancing with the Stars, Dr. Park, Dr. T.S. Park, dreams, foxtrot, journey, Netfit.tv, neurosurgeon, new legs, Nicole Luongo, Nicole Luongo YouTube, Nicole's New Legs - SDR Journey, passion, salsa, SDR, SDR anniversary, SDR surgery, Selective Dorsal Rhizotomy, St. Louis, world renowned, YouTube
“When you dance, your purpose is not to get to a certain place on the floor. It’s to enjoy each step along the way.” –Wayne Dyer
Today is my SDR Anniversary. Six months ago, I had Selective Dorsal Rhizotomy (SDR), the only surgical procedure that can permanently remove tightness caused by spastic diplegia, the most common type of cerebral palsy. My four month follow-up visit in St. Louis with Dr. T.S. Park went well. He was thrilled with my results! The tightness in my legs was completely gone, I walked much straighter (no more bent knees) with heel-toe motion (instead of striking the floor with my toes first), no longer leaning heavily to one side and both legs were even (they weren’t pre-SDR) – eliminating the need for ugly shoe orthotics. I was doing so well that I didn’t have to go to physical therapy anymore. WOW!
Dr. Park recommended that I continue to exercise (anything and everything I wanted to do) and most important, stretch for thirty minutes every day. Exercise has always been a part of my life. Stretching has not. I started the Netfit.tv 90 day body transformation program in August. I finally felt strong enough to to do these challenging workouts. They are no joke (I modify when needed) – cardio, core, burpees, planks, push-ups, weights – all in 30 minutes, give or take a few! The best part? They’re FREE if you have a Roku (love it) or Smart tv! If not, you can become a member on-line for a nominal monthly fee. I’ve been exercising six days a week (except Sundays) for the past seven weeks. Week eight starts tomorrow. I could have done these workouts before my operation. The difference is that now, in Dr. Park’s words (what he predicted for me after SDR), I can “do more with less effort.” Most people do not realize that because my CP is mild, I could dance, exercise, jump, run, play golf, play tennis, shoot hoops, and throw a football – all before SDR.
It’s important to understand that the surgery does not cure cerebral palsy. I still have the same challenges I had before: poor balance, range of motion issues, tight hamstrings, heel cords and hip flexors. The wonderful news is that my gait is dramatically different, I can walk up and down stairs without holding on (I would never attempt this before SDR) and I balance better on my right leg. I tried rock climbing for the first time. Wow, is that hard! What’s next? I want to learn how to ride a bike. I always thought (and was told, in one form or another) it was impossible. Contrary to popular belief, people with cerebral palsy who have not had SDR, can ride a two wheel bike. My SDR journey is teaching me to stop believing in limits – those imposed by myself or others. All of us are capable of much more than we imagine.
About a month ago, I decided to go back to ballroom dancing. I was curious about what it would be like with my new legs. It’s the same, yet different because I move better. I’m not so concerned about losing my balance. My legs, due to the lack of tightness, can move more freely. I still have problems with balance and turning around. Dancing is so much fun! Here I am with my instructor, William, at A Step Above Ballroom Dance Studio.
First, I chose to dance the foxtrot in honor of Dr. Park who, in addition to being a world renowned neurosurgeon, is also a competitive ballroom dancer. The foxtrot is one of his favorite dances. It’s also good for my hip flexors. Since SDR, it’s much easier to step back with my left leg, an integral part of this ballroom dance. Second, I chose to dance the salsa, my favorite of all!
Thank you to everyone at A Step Above for warmly welcoming me into the family. A special thank you to William for his charisma and kindness. He’s the reason I signed up for lessons (with him, of course) at the studio. He never lets me sit out of ANY class regardless of whether or not I think I can do it. He believes in my ability. When we dance, William leads me around the dance floor just like he would any other partner. No kid gloves. Just laughter and a great smile. All I have to do is follow his lead, try not to mess up or step on his toes! Or hit him. I feel so bad when that happens! William, thank you for making me feel like a star!
I dance because I love it. I dance because I CAN. I sat on the sidelines of life for many years. I rarely got asked to dance. Now, after my surgery, I’m going to dance like EVERYBODY is watching! If I mess up – “SO WHAT, WHO CARES!” Thanks to A Step Above, Dr. Park and SDR, I’m enjoying each step along the way. In my head, I dance just like the pros on Dancing with the Stars. And, I’m much taller, too!
Life is too short. If you get the chance to sit it out or dance – I hope you dance!
14 Sep 2013 2 Comments
It stands the test of time
like aged cheese and fine wine
a perfect blend
of the days and nights
of our lives
the dance between the sheets
the music that beats
to the rhythm of our hearts…
(c) Nicole Luongo
29 Jun 2013 2 Comments
in Writing Tags: "Dr. J", 2013 NBA Champions, 2013 NBA finals, basketball, basketball game, belief, believe, Boston, Boston Celtics, Bostonian, champion, champions, comeback, D-Wade, doctors, Dr. T.S. Park, Dr. TS Park, drama, Dwayne Wade, family, friends, fundraiser, Game 6, Help Nicole Get New Legs, history, http://www.dwaynewade.com, http://www.fundrazr.com, Julius Erving, Larry Bird, Los Angeles Lakers, magic, medical bills, Miami Heat, Mike Miller, moniker, NBA, NBA Championship parade, NBA playoffs, nickname, nicknames, Nicole Luongo, parade, physical therapist, Ray Allen, San Antonio Spurs, SDR, SDR surgery, Selective Dorsal Rhizotomy, shoeless Mike Miller, SLCH, South Florida, St. Louis Children's Hospital, support, surgery, teammates, The North End, victory, winners, winning
“When people believe in you, you can do amazing things in this world.” –Dwayne Wade
I used to be such an avid basketball fan that – at the tender age of two – my love for Julius “Dr. J” Erving earned me the nickname “Doc” bestowed upon me by my brother, John. Or, as I’ve also heard, the moniker was the result of my being so smart at a young age that I could have been a doctor! Being the youngest of eleven (six brothers, four sisters), from a family with Bostonian North End roots, it was inevitable that I’d be bit by the sports bug. It seemed basketball was in our blood, especially when it came to the Boston Celtics. Larry Bird was so revered in our house that my brother John named his cocatiel “Larry Bird!” When Larry “Legend” Bird – arguably the greatest NBA player of all time – retired in 1992, the sport was never the same. I boycotted basketball. My heart wasn’t in the game anymore.
I’m a native of South Florida. It’s always exciting to see your city’s team come out on top. Miami is as close as I’m going to get to my hometown of Hollywood. So, out of boredom and curiosity, I tuned into the second half of Game 6 of the 2013 NBA Finals. The Heat needed to win. They were down by double digits with just 30 seconds remaining in regulation play. A win seemed impossible. Then, magic started to happen! The shoeless shot by Mike Miller. The three pointer by Ray Allen that kept the Heat’s hope for a repeat title alive. The dramatic overtime ending reminiscent of a Celtics-Lakers rivalry. I’d just watched of the greatest games – and comebacks – in NBA history! The Miami Heat went on to win back-to-back championships in dramatic fashion, defeating the San Antonio Spurs in seven games. WOW!
I watched the 2013 NBA Championship parade paying particular attention to player interviews. Dwayne Wade talked about how having a great support system – family and teammates who believe in him – helped him overcome injuries during the playoffs. And, that’s when it hit me. Even three time NBA champions need people who believe in them. We all do. It’s because the Heat players believed in themselves – and each other – that they were able to pull off such a miraculous upset. They didn’t count themselves out even when the outcome looked bleak. A basketball game is not over until the final buzzer blares. The same is true in life. Be a champion! Stay in the game, (play your game and no one else’s) don’t count yourself out, and remember Wade’s wise words. Surround yourself with people who believe in you. You will be amazed at what you can do!
Life will surprise you. And, so will your friends – or people you thought were your friends. Prior to having Selective Dorsal Rhizotomy Surgery (SDR), I set up a fundraiser to raise money for the operation. The outpouring of love and support truly amazed me. What amazed me even more was that the majority of people who donated to Help Nicole Get New Legs have never even met me! On the contrary, I’ve received hurtful e-mails from friends I’ve known for years, saying it’s not appropriate to ask people to help pay for my medical bills. Their words were condescending and insensitive. I was shocked by their lack of support. It should not be unreasonable to expect long-time friends to call after having major spinal surgery. I am thankful for friends who visited me during my recovery.
D-Wade’s words got me thinking about my people – doctors, family, friends, my physical therapist and a wonderful on-line community – all of whom donated to my fundraiser and/or supported me on my SDR journey. THANK YOU for your donations (frequent flyer miles, money, etc.), love, support (making phone calls, writing e-mails/letters on my behalf, selling copies of my book, etc.) – and most importantly – for believing in me. THANK YOU for believing that I deserved to go to the best SDR neurosurgeon, Dr. T.S. Park, and encouraging me not settle for less! It’s made all the difference in my world!
07 Jun 2013 9 Comments
in News Tags: accomplish, achievements, birthday, blog, determination, facebook, fitness, heel, heel cords, heel to toe, heels, indoor rock climbing, jump, jumping, motion, Nicole Luongo, Nicole's New Legs - SDR Journey, physical therapy, Plantation Medical Rehab & Wellness, PT, rock climbing, SDR, SDR surgery, SDR update, Selective Dorsal Rhizotomy, self-talk, spinal surgery, strength, stretch, subscribe, updates, walking, Wikipedia, Wikipedia.org, You Tube, You Tube channel
SDR UPDATE – TEN WEEKS POST-OP:
Here I am jumping for joy in physical therapy (PT) at Plantation Medical Rehab & Wellness. Although I could jump before the surgery (not sure if I could jump up on a step), I would not have been able to do this three weeks ago due to lack of strength.
Why am I jumping in PT? There is so much required of the body just to be able to walk. And, to walk correctly, you need to be able to strike the floor first with your heel, then push off your toe, allowing the opposite leg to come forward. Since my heel cords are tight, it is important to stretch so I can walk correctly – heel toe, heel toe (this is what my self-talk sounds like) Jumping requires the same motion – just in a different way.
I'm turning 40 on Sunday! What a gift it is to be able to accomplish this just ten weeks after having spinal surgery!I look forward to sharing more accomplishments (indoor rock climbing is next) as I continue along my SDR journey. I invite you subscribe to my You Tube channel to receive the latest video updates.
29 May 2013 8 Comments
in Writing Tags: ability, achieve, AMA, AMA mantra, attitude, baseball, believe, body, Boston Red Sox, capacity, Cerebral Palsy, components, dedication, definition of success, desire, deterioration, Dr. Park, Dr. TS Park, fuel, gait, hamstrings, hard work, heel cords, hip flexor, hip flexor muscles, inventory, journey, Lou Holtz, mantra, motivation, muscles, necessary, physical prowess, physical therapy, Plantation Medical Rehab & Wellness, principles, propel, prowess, PT, reality, revelation, SDR, SDR surgery, secret, Selective Dorsal Rhizotomy, skills, Spastic cerebral palsy, stamina, strength, succeed, success, talents
“Ability is what you are capable of doing. Motivation determines what you do. Attitude determines how well you do it.” –Lou Holtz
Ever since having Selective Dorsal Rhizotomy (SDR) surgery nearly nine weeks ago, inquiring minds want to know if it was a success. I made it through the three hour operation without any complications. I am working hard to regain my stamina and strength in hourly physical therapy (PT) sessions, three times a week, at Plantation Medical Rehab & Wellness. Plus, I do daily PT exercises for my hamstrings, heel cords, and hip flexor muscles – the three areas Dr. Park recommended I focus on after the operation. People marvel at how much better I walk now, often saying, “It’s a miracle!” Sounds successful, right? It depends.
I say this because the definition of success is subjective, based on personal feelings and opinions. Every SDR journey is unique. Each patient has her own starting point, as well as personal milestones she’d like to accomplish. I’m still scratching the surface of what I am capable of both mentally and physically. While I’m happy with my results so far – the work that will truly gauge my level of SDR success – has only just begun. I will be successful! I know the secret to success – AMA: Ability, Motivation, Attitude. It works every time. There is no quick fix. There is no short cut. You cannot fail when you apply these tried and true principles. Let’s delve into the three components of AMA.
1. Ability: The capacity to do something. You must have the necessary skills and/or talents in order to achieve a goal. Let’s say, for example, that you want to play shortstop for the Boston Red Sox. You need to be honest about your ability to play major league baseball. Do you have the physical prowess necessary to succeed? Wanting to do something and being able are to do it are two vastly different concepts. Yesterday (with the aide of a gait belt and my awesome therapist, Jon) in PT, I practiced jumping on a trampoline, then on the ground, before jumping from the ground onto a step. Based upon my performance on the trampoline, etc., Jon knew I had the ability – the necessary skills (balance, muscle strength,etc.) to jump onto the step.
2. Motivation: The desire to do something. You can have all the ability in the world, but without strong desire – or motivation – nothing will happen. Motivation starts and ends with you. Only you know why you want to achieve or do something. Use your desire to fuel the motivation to achieve success. Motivation inspires action. Action propels success! Like the definition of success, our sources of motivation are subjective. Know what motivates you and use it to succeed! My motivation for having SDR surgery includes the desire to do more with less effort, learn how to ride a bike, and prevent further deterioration (and, possibly, a wheelchair, later in life) of my body due to cerebral palsy. I also (this revelation came after SDR) didn’t want to be stared at in public because of the way I walk. My gait has improved so much that this is now a reality!
3. Attitude: A way of thinking typically reflected in a person’s behavior. The way you think – your attitude – determines how you will behave. If you think you can do something, you’re right. If you think you can’t do something, you’re still right…unfortunately. Like Lou Holtz said, attitude also determines how well you do something. Yesterday, My PT reminded me to tell myself (after tentative attempts) I was going to jump on the step. Guess what? It worked! Go ahead – have an attitude! It’s essential to your success.
Take inventory of your abilities and talents. Know what motivates you. Get an attitude and believe in yourself! AMA: Ability + Motivation + Attitude = The Secret to Success! Use the AMA mantra along with dedication and hard work to achieve your goals. Success is guaranteed!
10 Mar 2013 Leave a comment
March is Cerebral Palsy Awareness month. My SDR surgery is on March 29…19 days away and counting! Read my CP story for updates!
Originally posted on bareyournakedtruth:
My obsession with shoes started when I was just three years old. I slipped my hands through the shoes and began to crawl from room to room on my hands and knees. Thirty nine years ago, I was born two and a half months premature. I weighed only two pounds thirteen ounces – the size of a baby chicken! I stayed in an incubator for almost two months. My family was so excited when I finally came home.
When I was eight months old, my mom stood me up on a table to change me. She noticed that if she did not hold on to me, I would wobble from side to side. I stood on the tips of my toes. I could not rest my feet flat on the floor. Lacking balance, I rarely took a step without holding on to something. My parents began to worry. They wondered…
View original 936 more words
18 Feb 2013 4 Comments
in News Tags: appreciate, buy Naked Desires, Cerebral Palsy, donations, Dr. Park, fundraiser, goal, Help Nicole Get New Legs, HopeMob, hopemob.org, intense, journey, local news, Medicaid, Medicare, Naked Desires, physical therapy, SDR, Selective Dorsal Rhizotomy, St. Louis, support, surgery, walk, WSVN 7, www.hopemob.org
HopeMob is featuring Help Nicole Get New Legs! as a rotating STAFF PICK on their homepage for the next week due to the inconvenience of a system update that did not pick up my story when I originally submitted it. THANK YOU, HopeMob! PLEASE click the share button and re-tweet the link as much as possible so I can raise more money for SDR, a surgery that will eliminate the tightness in my legs due to cerebral palsy. This will help tremendously! So far, I’ve raised $3,170! I am also selling autographed copies of my book (U.S. orders only), Naked Desires, to raise money for my surgery.
Although my surgery is scheduled for March 29, I am still fundraising for the $50,000 on Fundrazr and HopeMob to increase exposure. Why? Because although Dr. Park accepts Medicare (allowing him to perform the surgery), I DO NOT know how much, if anything, Medicare will cover. Plus, if Medicare doesn’t cover at least 60% of the cost (this is what Dr. Park’s office told me), I CANNOT use Medicaid (my secondary insurance) to pick up the rest of the bill. I saw a Help Me Howard story on WSVN 7 about a six year old girl from South Florida who wanted to have the surgery with Dr. Park. Unfortunately, she was DENIED coverage by Medicaid because Dr. Park is not located in Florida.
So, I have to keep fundraising in the event that NOTHING is covered. Plus, I will most likely have deductibles, etc. I know it’s confusing….believe me, I have been trying to make sense of all of this for months! So, please, don’t think that I am trying to raise money I don’t need. I am not that type of person. I haven’t spent a cent of the $3,170 donated thus far. Part of the donation money is going to pay for my $800 hotel bill since I will be in St. Louis for eight days. I got a discounted rate and will turn in my credit card reward points for Marriott gift cards, which I will apply to my bill. I am doing everything I can to reach my goal. I so appreciate everyone who continues to support me on this journey. The surgery is the easy part. Physical therapy (4-5 times a week) will be intense. I will have to learn to walk all over again. It will be worth it!
31 Dec 2012 12 Comments
My first year as a blogger has been a success! A BIG thank you to everyone who visited my blog in 2012. Thanks for your comments, shares, tweets, and support. I could not have been successful without my loyal followers, family and friends who support my writing endeavors. I look forward to new blogging opportunities and reaching new heights in 2013. Make NEW YES Resolutions! and have a Happy New Year!
The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog.
Here’s an excerpt:
600 people reached the top of Mt. Everest in 2012. This blog got about 10,000 views in 2012. If every person who reached the top of Mt. Everest viewed this blog, it would have taken 17 years to get that many views.
07 Dec 2012 9 Comments
My blog reached 10,000 total views today!! I hoped to reach this milestone on or before bareyournakedtruth’s one year anniversary on January 4. I did it! Thank you to everyone who has visited my blog, liked a post and provided encouragement with supportive comments. I’m lucky to be a part of such a wonderful blogging community. WordPress is wonderful! Thank you to my Facebook friends and Twitter followers who have supported me on this journey.
18 Nov 2012 16 Comments
in News, Selective Dorsal Rhizotomy (SDR) Surgery, Writing Tags: Achilles tendons, airline tickets, balance, cause, Cerebral Palsy, CP, crowdfunding, doctor, donate, Dr. Park, facebook, family, fight, flexibility, fundraiser, Fundrazr.com, goal, Google+, Help Nicole Get New Legs, hope, hotel accommodations, insurance deductibles, kindness, Medicaid, Medicare, operation, physical therapy, premature, PT, SDR, Selective Dorsal Rhizotomy, share, shoes, spastic diplegia, spasticity, St. Louis, support, surgeon, surgery, tightness, Twitter, walk, world renowned
My obsession with shoes started when I was just three years old. I slipped my hands through the shoes and began to crawl from room to room on my hands and knees. Thirty nine years ago, I was born two and a half months premature. I weighed only two pounds thirteen ounces – the size of a baby chicken! I stayed in an incubator for almost two months. My family was so excited when I finally came home.
When I was eight months old, my mom stood me up on a table to change me. She noticed that if she did not hold on to me, I would wobble from side to side. I stood on the tips of my toes. I could not rest my feet flat on the floor. Lacking balance, I rarely took a step without holding on to something. My parents began to worry. They wondered why I was not walking. They took me to my pediatrician; he thought I had weak ankles. Nearly two years passed. I still was not walking on my own. My parents knew something was wrong. At 28 months, they took me for a neurological evaluation at Variety Children’s Hospital in Miami. The Director of Child Neurology informed my parents that I had (spastic diplegia) cerebral palsy (CP). The doctor told my mom I would never be a ballerina. Then he asked with a smile, “how many ballerinas do you know?” How ironic since I stood on my toes! The doctor told my parents not to force me to walk; he said I would walk when I was ready.
I grew into a happy little girl with big, brown eyes and dark hair. Each day, I discovered a new pair of shoes. I had a blast crawling around the house with my hands in shoes, which became my symbol of hope because I could not do the one thing I wanted to do most – walk. I knew I was not ready to walk on my feet, so I found another way to accomplish my goal. I did not walk like everyone else. What mattered is that I found a way to walk. All I had to do was put my hands in the shoes and go! I learned at a very young age how far I could go in life just by being determined. Looking back, I realize I probably did not even think about what I did. I knew I wanted to walk. And, I did – in my unique way.
I spent the first four and a half years of my life walking in other people’s shoes. I desperately wanted to walk in my own. On January 11, 1978, an orthopedic surgeon lengthened the Achilles tendons in my legs. The operation changed my life forever. However, the change did not happen right away. I stayed in the hospital for four days with casts up to my thighs. I remember lying still and feeling itchy. I could not wait to go home! Finally, I went home in a wheelchair. I learned to walk with my own two feet – something I had never done before. I would stand stiff against the wall staring at a brother or sister who stood across from me encouraging me to take my first steps. I was scared. Everyone in my family wanted me to walk. I didn’t move. This went on for some time.
My mom took me to the doctor for a follow up visit and expressed her concern. He looked at her straight in the eye and said, “she should not be walking at all. She is a miracle.” Learning to walk without assistance was not easy. First, I wore braces up to my knees. Then, just in time for Kindergarten, I wore full-length hip braces. As you can imagine, the other kids teased me constantly.
Eventually, I learned to walk on my own. Now, as an adult, I am experiencing problems associated with CP and the constant stress on my body. I tire easily when walking. If I walk too much, I can experience back pain. I have problems stepping up curbs with my right leg – something I never had problems doing until five years ago. This continued to be a such a problem that I asked my orthopedist for a cane. I couldn’t bring myself to use it. I could continue to have these problems and more as I age, possibly requiring the use of a wheelchair. I do not want this to happen to me!
Although I work out and try to stay active, my balance and flexibility are poor due to CP and the tightness (spasticity) it causes. Selective Dorsal Rhizotomy (SDR) is the only procedure that can permanently eliminate the tightness in my legs. This surgery will allow me to do things I’ve never even imagined – walk with greater ease and fluidity, have better balance and flexibility – just to name a few. One thing I’d love to do is ride a bike. SDR may make that possible!
My Coventry Medicare HMO insurance denied my request to have SDR in St. Louis with Dr. T.S. Park, the surgeon world renowned for this procedure – and one of the few who performs SDR on adults. Dealing with the insurance company has been a very disheartening process. **UPDATE** I switched from Coventry to original Medicare plus Medicaid as my secondary insurance. I will have the surgery on March 29! I am still fundraising because I will not know how much of the $50,000 Medicare/Medicaid will cover until AFTER my operation. FL Medicaid does not cover out of state services (only in a case of emergency), so I most likely will be denied coverage and will have to appeal.
I have raised over $4,250 so far – thanks to the kindness of family, friends and many people I’ve never had the pleasure of meeting. The kindness of strangers has truly been remarkable! All donations will be applied to costs associated with my surgery: airline tickets, hotel accommodations, insurance deductibles, physical therapy (I will need a lot of post-surgery PT), etc.
Please consider making a donation to Help Nicole Get New Legs so I don’t have to fight Medicare/Medicaid after my surgery. You can also help me get the word out by sharing my fundraiser. Just click the links below to share on Facebook, Google+ and Twitter. Thank you to everyone who has donated to and supported my cause. Every cent (and share) counts!
11 Nov 2012 2 Comments
PLEASE SHARE/RT THIS POST!
As many of you know, I was born with cerebral palsy. I am 39 years old and recently learned of a surgery that can significantly provide reduction of spasticity in my legs. This means I will have better balance, walk better, less tightness and stiffness in my legs and an overall positive effect on my life and well being. The surgery is called Selective Dorsal Rhizotomy (SDR), procedure performed on patients with cerebral palsy.
My Coventry Medicare HMO insurance denied my request to have SDR in St. Louis with Dr. Park, the surgeon world renowned for this procedure – and one of the few who performs SDR on adults. Dealing with the insurance company has been a very disheartening process.
This is where you can assist me and my family. We need to raise money for the surgery (at least $40,000), for the physical therapy needed after surgery, for airline flights and accommodations for two people to travel to St. Louis for 8-9 days for the surgery and to return four months later for a follow-up visit.
It is recommended that the surgery is done by the patient’s 40th birthday. I will be 40 this June. It would be an incredible birthday gift. I planned to have the surgery in March 2013. This will not happen unless I raise the money. I need your help to get new legs! Please reach into your hearts and help any way you can.
Thank you for your donation! Every cent counts! Please help me spread the word by sharing my story with your family and friends.
31 Oct 2012 Leave a comment
Originally posted on bareyournakedtruth:
I’m VERY excited to announce that I will be a contributing blogger for The Balancing Act, a television show for women on Lifetime TV. I kept following up and my persistence paid off! This is NEW territory for me. I’m saying YES to this wonderful opportunity!
I am honored to be a part of this accomplished group of writers. Wish me luck! I’m excited and nervous! Now I need a head shot and a bio….anyone want to help write my bio?
*UPDATE* – 10/24/12: It’s official! I am contributing blogger for The Balancing Act! Check out the my bio.
05 Oct 2012 7 Comments
in News Tags: ask, blogging, blogging community, Cerebral Palsy, facebook, game of life, Google+, Hajra Kvetches, lesson, life, Naked Desires, Nicole Luongo, possibility, Twitter, We Blog Stalk, win, winning
This morning when I opened my e-mail, the subject line that read “+Nicole Luongo you have been stalked,” quickly caught my attention. I was thrilled! Normally, I would not be so excited to learn someone is stalking me. This truly is great news!
I am honored to be featured (and stalked) on We Blog Stalk. This wonderful opportunity came about because I posted a comment congratulating another featured blogger. I asked how I could be featured, too. Hajra responded and the rest is history! I simply asked and the universe answered. Here is the lesson: if you don’t ask for what you want, you most certainly won’t get it. If you ask for what you want, there is always the possibility that you will get it. JUST ASK!
When I started blogging nine months ago, I had no idea of where it would lead or what I would share, other than poetry. Now I write about cerebral palsy and how to win the game of life. Being part of the blogging community has allowed me to meet so many wonderful, supportive people. Blogging is a perfect fit for me; I wish I’d done it sooner! I warmly welcome everyone who visits my blog, follows me on Facebook/Twitter and will gladly reply to all comments.
To read more about Hajra, please visit her personal blog at Hajra Kvetches.
04 Sep 2012 17 Comments
in Guest Posts, Poetry, Writing Tags: acceptance, alone, Alzheimer's Disease, body, caregiver, Caregiver Cruise Giveaway Contest, caregivers, Cerebral Palsy, change, Charisse Living with Cerebral Palsy, charitable assistance, charity, creation, dance, death, devices, dignity, dreams, facebook, family, fears, friend, gifts, greatness, guest post, I AM, invincible, jeers, joy, laugh, love, nightmare, orthopedic, pain, passion, prison, sing, spirit, taunts, teacher, The Buffalo News, therapeutic, time, torment, unique, within, World Cerebral Palsy Day
I have cerebral palsy (CP), so I was thrilled to learn that my blog’s eight month anniversary, Sept. 4, 2012, is World Cerebral Palsy Day – an innovative way for 17 million people with CP to tell the world how they want to make their lives better. The theme for this unique day (a world first) is ‘Change my world in 1 minute’. Please wear green and visit the website for more information about how people with CP, their family and friends can submit one minute ideas suggesting ways to improve the lives of those living with CP. During the month of September, everyone is encouraged to go online, review the ideas and vote for the concepts that will have the greatest impact on people’s lives. Thank you, Charisse Living with Cerebral Palsy, for posting the information about this special day on your Facebook page. Charisse’s goal is “to show others that people with disabilities can do things other people can do, we just sometimes do things differently in our own unique way.”
In honor of World Cerebral Palsy Day, here is a powerful poem written by Marty Gregoire, founder of Footsteps of WNY, an organization that provides charitable assistance to individuals with cerebral palsy by directly purchasing medically prescribed orthopedic and therapeutic devices not covered by insurance.
I met Marty through Facebook. He saw my entry in the Caregiver Cruise Giveaway Contest, posted a comment and we became fast friends with so much in common – growing up the youngest in a large family, having cerebral palsy and being a caregiver to a mom who has Alzheimer’s Disease. Marty inspires everyone he meets. He impacts the lives of people living with CP one footstep at a time. Read why Marty runs for those who can’t in The Buffalo News.
09 Aug 2012 24 Comments
in Writing Tags: achilles tendon, Alzheimer's, Alzheimer's Disease, awards, Benjamin Snow, caregiver, Cerebral Palsy, common sense, CP, disabilities, disability, Disability is Natural, disability issues, disease, excellence, friend, good news, grades, ideas, insensitive, Kathie Snow, kids, limp, mom, neighbor, nun, nursing home, orthopedic surgery, random, remarks, school, short film, shower, speculation, student, stupid, taunt, tease, tensions, thoughts, Thumbs Down to Pity, walk, water, YouTube
“Disability is natural. We must stop believing that disabilities keep a person from doing something. Because that’s not true – having a disability doesn’t stop me from doing anything.” Benjamin Snow, director of the award-winning short film, Thumbs Down to Pity.
Some of the best ideas come to me when I’m in the shower. Maybe it’s because the water washes away the tensions of the day, allowing me to think random thoughts. This morning, my mind wandered back to my school days. I loved learning (with the exception of any subject remotely related to math) and worked hard to earn excellent grades. I was a model student, however, other kids taunted and teased me. Due to cerebral palsy (CP), I walked with what many describe as a limp. The type of CP I have is called spastic diplegia, which means only the lower extremities are affected. At five years old, I had orthopedic surgery (Achilles tendon lengthening), which enabled me to walk. I am fully ambulatory.
It’s fair to say that dealing with a disability is not easy. In addition to living with CP, I am also a caregiver for my mom who has Alzheimer’s Disease, which is definitely disabling. I’ve been spending the past week taking care of Mom. What is even more disturbing than her disease? The insensitive, stupid remarks made by friends and neighbors. Here are a few examples:
Mom (to a friend) – “They say I have Alzheimer’s.”
Friend (to Mom) – “That’s not good.”
Mom (to me) – “Tell her what I have.”
Me (to a neighbor, somewhat reluctantly) – “She has Alzheimer’s.”
Neighbor #1 (to Mom) – “You don’t look like it.”
Neighbor #2 (to neighbor #1) – “It’s in the early stages.” Pure speculation.
Mom (to a friend who used to be a nun) – “I’m never alone. My kids take turns staying with me.”
Friend – “It would be better if you were in a nursing home.” This woman
continued with this train of thought, even after my mom said, “Oh, no, I don’t want to go to a home.”
Excuse me? When did it become acceptable to say these things to an Alzheimer’s patient? I firmly believe that perhaps people would not say these things if Mom had a different disability/disease OR they actually knew anything about Alzheimer’s and how to deal with people who have it. The Disability is Natural homepage, created by Kathie Snow (Benjamin’s mom), asks: “Isn’t it time for some common sense, new ways of thinking, and good news about disability issues?”
06 Aug 2012 1 Comment
I need your VOTES! I’ve dropped to number FIVE and need to get back to the top. As many of you know, my brother entered me in a caregiver cruise contest giveaway (our mom has Alzheimer’s). Please vote (every day if you can) using your cell phone and computer, reblog this post, share the link on Facebook and Twitter until Sept. 15. I sincerely thank each one of you and promise to return the favor. Anything is POSSIBLE! With your help, I can regain the top spot! THANKS!
Originally posted on bareyournakedtruth:
As many of you know, I am a caregiver for my 83 year old mother who is living with Alzheimer’s Disease. My brother entered me in a Caregiver Cruise Giveaway Contest sponsored by Home Instead Senior Care. I need your VOTES so I can win the cruise, a Kindle Fire, a video camera AND up to 40 hours of in-home non-medical care for Mom.
Here is the link to VOTE: http://cruise.caregiverstress.com/entries/nicole-l/
Remember, you can return up to once a day to vote during the Contest Period (July 15, 2012 through September 15, 2012). Please help spread the link on facebook, Twitter, to your friends. You can vote TWICE a day if you use your cell phone AND computer!
Thanks so much!