RIP, Michael Jackson: The King of Pop

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.

 

I’m in the Baldwin City Signal!

I’m in the newspaper! Be sure to read about my adventures at

Happy Birthday + Bike Camp!

“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!

image     imageIf 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 thru 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! image 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. :-)         imageimageGraduation 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 keep going 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.”

photo-5Thank 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 still need a little practice 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!

My SDR Story in the News!

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.

SDR One Year Later: Daring Greatly

“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.

Dream Changer-Featuring Author Nicole Luongo

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…

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National Cerebal Palsy Awareness Day: Guest Blog Post for Life Once Dreamt

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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).

SDR Update: Cool Running!

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.

The next step on my SDR journey is to train with the world-renowned Mike Poole at MP Fitness. Donate to my fundraiser to help my new legs train in Scotland .

Buy Bracelets for Bravery!

Thank you to my friend, Kaity Guedel at Inspiration Loom, for starting a Bracelets for Bravery fundraiser to Help Nicole’s New Legs Train in Scotland!

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Photo courtesy of Kaity Guedel

ATTENTION EVERYBODY!!
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!

Kaity Guedel
Inspiration Loom

Help Me Win a B-School Scholarship!

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!

Nicole

Nicole’s New Legs Featured in Perthshire Scotland Daily!

Thank you to the Perthshire Scotland Daily for featuring my story and sharing it on Twitter!

Help Nicole’s New Legs Train in Scotland!

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.

3. Buy Bracelets for Bravery!

4. Please SHARE and RE-TWEET this post as often as possible!

Thank you for supporting my SDR journey!

Love,

Nicole

Dancing With Disabilities: Guest Post From Author Nicole Luongo!!!

bareyournaketruth:

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…

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Dance Anyways!

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 -

not graceful,

or ready,

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!

Dance Anyways!

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,

Dance!

Dance Anyways!

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.

So Dance!

Dance now!

It doesn’t have to make sense.

Dance!

Dance Anyways!

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)

Bio:

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.

My blog’s 2013 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.

Click here to see the complete report.

SDR Update: Nine Months Post-op!

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!

World Cerebral Palsy Day

Today is World Cerebral Palsy Day. Wear green to show your support.

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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.

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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.

Dancing with SDR!

“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!

Forever Love

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…
forever love.
(c) Nicole Luongo
9/14/13.

Wade’s Words

“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!

From SDR Surgery to Rock Climbing!

I recently purchased a Living Social deal for four indoor rock climbing sessions. I’ve never done it before, so I have to get ready! Jon, my physical therapist at Plantation Medical Rehab & Wellness, created this contraption. Unfortunately, the volume on my camera stinks so you may not be able hear him explaining what we are doing and why. Basically, crawling with resistance will prepare me to rock climb. This activity helps improve my Dorsiflexion range of motion (ROM), which is necessary to walk.

Here is the torture (just kidding) I endured in therapy today:

Climbing #1

Climbing #2

JUMPING FOR JOY!

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.

The Secret to Success

“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!

bareyournaketruth:

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

HopeMob is featuring Help Nicole Get New Legs!

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!

I’m Today’s Fabulous Friday Female at Feminine1st.com!

Thank you to my friend, Jodi McMasters, who nominated me to be Today’s Fabulous Friday Female. Her article was selected for publication on July 25, 2013. This is truly an honor especially since Jodi is one of the most inspiring people I’ve ever met!

Do you know a Fabulous Friday Female? Contact Claire Brummell, Director of Feminine1st.com at claire@feminine1st.com with the following information:

1. Who is your Fabulous Friday Female? Include her name and location in the world.
2. Why is she a Fabulous Friday Female to YOU? How do you know her? What does she do? In what way is she inspiring?
3. A photo or link to a picture of her online. If there is a reason that you would prefer not to include a photo, just let Claire know.

Join over 125 single ladies for Claire’s upcoming FREE Valentine’s Day webinar about the 7 mistakes single women make when looking for love. You can check out Video 1 immediately and then join Claire on the 14th when she’ll be sharing the rest of the 7 mistakes single women make when looking for love and the one thing you need to know to attract the relationship you desire and deserve.

Check out the Free Webinar – 7 Mistakes Single Women Make When Looking for Love.

My Blog’s First Anniversary!

One year ago today, I decided to start a blog, thanks to the encouragement of my best friend, Renee. Blogging was the best decision I made in 2012! It allows me to share my articles and poems with people all around the world. I’ve met the nicest people – many of them fellow bloggers – who have supported me from the beginning. I’ll never forget how exciting it was to receive multiple awards from bloggers (six in one week) just two months after dipping my toe into the WordPress waters. Getting nominated from peers inspired me to keep going even when I wasn’t sure what I was doing! Thank you to my top three commenters: readinpleasure, thejerseygal, and boomiebol. I’ve become friends will these wonderful women. Their work is terrific!

Blogging opened up a world of possibilities. I jumped right in and started posting. Soon, I met new friends. I learned a lot from so many talented people. I joined The Blogging Mastermind Comment Tribe on Facebook – a great group that helps boost blog traffic. I was fortunate to be featured on many sites throughout the year, thanks to the following people I met (with the exception of Marisa, who is a friend in real life) as a result of blogging: Darlene from Peeking Between the Pages, Hajra Kvetches from We Blog Stalk, Gene Manual from The Whirling Blog, Alicia Rades from A Guide 4 Women, Deanna Samaan from The Lovely Pink Diva, Lisa Marie Selow, Marisa Zepierri-Caruana from Wordslingergal, and Serena from Savvy Verse & Witt.

Here are the highlights with lots of links to get you caught up:

In April, I participated in the National Poetry Month 2012 blog tour at Peeking Between the Pages.

In May, I announced GROUND BREAKING BLOGGING NEWS! Check out my blog posts as a contributing blogger for The Balancing Act.

In June, I wrote my first author guest post for The Whirling Blog. This was the first guest post I’d ever written. Thank you, Gene Manuel, for saying yes and featuring a newbie on your awesome blog. I was also the featured author interview for a special edition of The Lovely Pink Diva. Read June News to find out which awards I won just in time to celebrate my birthday!

In July, I was the first featured Wonderful Woman for A Guide 4 Women. I am honored that Alicia Rades, a fellow blogger and one of my loyal supporters, chose me to debut this new section on her site. Alicia is wonderful! Contact her if you want to nominate a wonderful woman in your life. July also marked my entrance (thanks to my brother) in a Caregiver Cruise Contest Getaway. So many people voted for me over a period of two months. Thank you for your multiple votes, shares, and tweets. The reason for my entrance was revealed when I learned about a life-changing surgery for people with cerebral palsy.

In August, my friend and Hay House best selling author Lisa Marie Selow, invited me to write an excerpt for A Positive Rebel’s Companion, an ebook she offers as a gift (just one of many cool gifts) if you order her self-help book, A Rebel Chick Mystic’s Guide. Lisa is also gifting a copy of the ebook if you make any sized donation to my campaign. Thank you, Lisa, for dedicating a post on your website about my simple dream of getting new legs.

In October, I was delighted to be featured on We Blog Stalk! simply because I asked. Wow, it really is that simple!

In November, I started a fundraiser to raise the money so I can have SDR in March. So far, I’ve raised close to $2,700 thanks to donations from family and friends – mostly facebook friends I’ve never had the pleasure of meeting. Thank you so much for your donations and support. Find out how you can help me get new legs by downloading “Don’t Let Christmas Go” for just 99 cents. Thank you to the award winning writers of “Hiding from the Rain,” Jeana Potthoff and Richard Roman, for donating their songwriter’s royalties on the first 5,000 downloads of this beautiful song.

On December 4, my poetry book, Naked Desires celebrated ten years in print! Three days later, my blog reached a major milestone! Last, but certainly not least, my friend Marisa Zeppieri-Caruana featured Naked Desires on Wordslingergal.

It’s been quite a year! I couldn’t have made it this far without the support of my readers. I am grateful to my family, friends, and all my fellow WordPress bloggers for leaving comments, liking posts and following my blog. Instead of the typical resolutions, I’m making NEW YES Resolutions! I’m saying YES to getting in good shape for my surgery! I’m saying YES to reaching new blogging heights in 2013!

What are you saying YES to this year?

My blog’s 2012 year in review

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.

Click here to see the complete report.

NEW YES Resolutions!

Resolution: “A course of action determined or decided on.”

As 2012 comes to a close, we start to think about our resolutions for the new year. Work out three times a week. Lose 10 pounds. Eat more fruits and vegetebales. Most likely, you carry the same resolutions from year to year. Forget New Year’s resolutions. Let’s create NEW YES resolutions instead. Consider the following three reasons:

1. A NEW YES resolution can start any time of the year, any day of the week. In 2013, say YES to freeing yourself from the pressure of creating a list of resolutions that will let you down. According to Statistic Brain, only eight percent of people are successful in achieving their resolution. NEW YES resolutions encourage success, which is the result we all want. No one wants to feel like a failure for not following through on our intentions. When all else fails, start over. Say YES again!

2. A NEW YES resolution is about saying YES to whatever and whomever is important to you. It’s necessary for women to set boundaries. Commit to loving yourself enough to know when to say no. It’s healthy to limit your exposure to toxic people, or say no to volunteering for projects that drain your time and leave you feeling overextended. In 2013, say YES to the things and people you love. You will be happier and so will those with whom you interact. Say YES to you!

3. A NEW YES resolution sounds better than a New Years Resolution. Doesn’t it? The next time a friend asks about your New Years Resoultions, make the shift and encourage her to make NEW YES resolutions. Create a NEW YES community. Imagine spreading love and positivity ALL year round. Now, that’s the spirit! YES!

Start writing your NEW YES resolutions whenever you want! It’s your YES list. It’s never too early or too late to live life on your own terms. You can do it! YES, it’s true! It’s up to YOU!

What are you going to say YES to in 2013?

Naked Desires Featured on Wordslingergal!

Thank you to my friend and fellow writer, Marisa Zeippieri-Caruana, for featuring Naked Desires on her website: Wordslingergal. I met Marisa a few years ago when I decided to attend a Meetup group, hoping to meet some new friends. I hit the friendship lottery when I met this beautiful, successful woman, whom I admire for her kindness and prowess as a writer. Her personal story about living with Lupus is a must read for anyone facing the challenges of an autoimmune disease.

Marisa, an accomplished freelance writer featured in many publications, says her website is “for every published writer and aspiring writer out there.” I am honored that Marisa enjoys my poem Between Us so much that she decided to share it with her readers.

Milestone: 10,000 Total Views!

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.

Naked Desires Celebrates 10 Years in Print!

Today marks the tenth anniversary of my poetry book, Naked Desires, which is available for purchase in Kindle edition, hardcover, and paperback.

Naked Desires would not exist without encouragement from my friend and fellow iUniverse author, Tony DeLiso, who wrote Legacy: The Power Within in 2000 when the self-publishing industry was just getting its wings. He suggested I put my poems in a book. At first, I didn’t think much about it. I simply wrote the words that came to me most nights before going to bed. I continued writing for three years until I had enough poems to publish my book. The idea of writing a book – never mind publishing one – ever crossed my mind. I’ve been an author for ten years? Wow! It’s still hard to believe since I never planned to write a book. This blog would not exist if I hadn’t expressed my innermost thoughts in poetic form a decade ago.

Thank you to everyone who has supported me along this journey. I hope you will enjoy my poems for many years to come.

Songwriters Donate Royalties to Help Nicole Get New Legs!

The award winning writers of “Hiding from the Rain,” Jeana Potthoff and Richard Roman, are donating their songwriter’s royalties on the first 5,000 downloads of their new song, “Don’t Let Christmas Go,” to help me get new legs. For just 99 cents, you can download Don’t Let Christmas Go and help me raise the money to have  Selective Dorsal Rhizotomy (SDR) next March.

Jeana Potthoff is from Lincoln, Nebraska. She is a wife and mother to a 12-year-old daughter. Other than taking care of her family, she teaches piano and violin lessons and writes music. Since starting a writing partnership with Richard Roman in 2010, she and Richard have focused on creating songs with strong, meaningful messages.

Richard Roman is a songwriter from North Canton, Ohio. He is a lyricist who has written with composers from all over the world. In 2008, he created a website  72words.com to distribute the Secret to Happiness verse and song. The website also has the Giving Songs that he and Jeana Potthoff wrote to raise funds for good causes.

In 2009, Richard started 72 Words Productions to create virtual world music videos. He has made music videos for the Grammy nominated artist Alissa Moreno and the teen TV star from Singapore Ming Bridges. The music video of “Everyday “was is in the Rock and Roll Hall of Fame’s Library due to its historical significance. It is the first music video made with a Grammy nominated artist performing as themselves in a virtual world. Richard is the playwright for the musical Blue Moon. He wrote the book and all the lyrics to the songs. The music was composed by Denis Couture of Montreal. He produced a staged reading of Blue Moon on August 19, 2011 at the Players Guild in Canton, Ohio.

Jeana Potthoff and Richard Roman are the Giving Songwriters who wrote the song “Hiding from the Rain.” Jeana’s grandparents had Alzheimer’s and Richard’s dad had dementia. Richard created a video to honor the caregivers who give their love unconditionally. These compassionate writers use “Hiding from the Rain” to increase awareness and support. So far, 14 Alzheimer’s and caregiver organizations have shared and promoted the video to help their cause.

Jeana and Richard believe in writing songs with powerful messages. They have always wanted to write a Christmas song about how the spirit of Christmas should stay with us all year round. They were inspired from working with Shara Strand on “We’re in this Together” to write “Don’t Let Christmas Go” with her.

I became friends with Richard after learning of our mutual interest in spreading Alzheimer’s awareness. As a caregiver for my mom, I truly admire and appreciate Richard’s tireless devotion to increasing awareness and support so that our loved ones are never forgotten.

Thank you, Jeana and Richard, for donating your songwriter’s royalties from the first 5,000 downloads of “Don’t Let Christmas Go” to help me raise the money for a life-changing surgery. Your generous act of kindness embodies the spirit of your beautiful song, which encourages us to keep Christmas love in our hearts so that we can experience joy and peace every day of the year. It is an honor to know both of you.

My cerebral palsy (CP) Story

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!

10 Ways to Practice Positive Rebellion

10 Ways to Practice Positive Rebellion
By Lisa Marie Selow
Hay House, Inc. Author of A Rebel Chick Mystic’s Guide
http://lisaselow.com

When you think of rebellion, do images of leather jackets, motorcycles, illegal drugs, or even violence come to mind? Maybe you think of rebel without a cause, someone who is on the path of self-destruction?

What if rebellion could be a positive thing? What if you used it in personal development to write your own rules for living? These are the ideas I explore in my book, A Rebel Chick Mystic’s Guide (published by Hay House, Inc., November 26, 2012). The book is a self-help book for brave, misfit women (or for those who aspire to be).

My book facilitates readers in writing their own guide, since no book or person can really tell you how to live your life. Part of this journey is clearing away the limiting beliefs women tend to inherit. I playfully describe this process as, “shifting the shit.” I provide tools and exercises developed from working with clients (mostly female) in my life coaching practice. These ignite readers to get off the couch and take action to create her heart’s desires. By creating a happier, more peaceful life, you are in a better place to help others and the planet as a rebel with a cause.
The following are some methods to practice positive rebellion in your own life:

1. Reject the mass media’s version of reality. The popular media often brings messages of materialism, violence, competition, greed, chaos, and doom. Rebel against this very, one-sided, limited view of the world. Don’t buy into it! Instead, focus on what is right in your own life. Trust me, so much of your life is good. If you’re reading this, chances are, you at least have computer access. I’ll bet that you also have a roof over your head, clothing, food, clean
water, and at least one person who loves you.

2. Be happy now. Don’t delay your happiness until you have the right body, job, romantic partner, house, or car. If you base your happiness on external conditions, it’s a sure way to disempower yourself. Material things wear out and conditions and people are changing. True, lasting, happiness comes from within. Happiness is a choice. Choosing happiness is the ultimate form of positive rebellion. You can choose to be happy, even if those around you are angry, depressed, negative, or whiny. Be so happy that even outer conditions such as a struggling economy or job market can’t affect your happiness.

3. Let go of your childhood pain. Don’t hold onto old hurts. Liberate yourself by forgiving your parents and caretakers. Rebel against your own resentment, anger, sadness, or frustration. Forgiveness does not mean that you condone others’ unloving behaviors. It’s releasing the negative associations in your mind and heart, so that you can feel lighter and more peaceful. You don’t even have to directly forgive the person. Just let go in your mind. It’s a process, so you forgiveness may not happen overnight.

4. Stop trying so hard to please everyone. Women especially are socialized to take care of everyone else’s needs. I describe my own journey of letting of my inner good girl and June Cleaver. It’s important to set some boundaries with love. In my book, I have readers make a list of their personal and professional needs, along with making an action plan to get these needs met. Something seemingly simple as asserting the need to have 10-15 minutes of quiet time can cause some people to have anxiety. Taking care of yourself is not selfish, but it may take some time for loved ones to adapt. Be rebellious and do it anyway, before stress affects your physical body. It’s okay to say, “I’d love to help you, but not at this time.”

5. Shift your “crap-itude.” Crap-itude is a term I use in my book to describe having a crappy attitude. Having a positive mental attitude and happiness are closely related. If you focus on what is wrong in your own life and in the world, happiness will elude you. Rebel against your inner crap. Some days, you may even have to fake it until you make it. Reject the negativity of the past in your mind, ditch your inner critics, and stop worrying about the future.

6. Be seen and be heard. Sometimes women (and men) grew up with someone giving them the limiting belief that they should “be seen and not heard.” At times, well-meaning authority figures try to quiet or even silence children. Yet, the world needs you to speak up and express yourself. There are causes of all sizes and varieties that need your help. If you don’t express yourself, others miss out on your creativity, brilliance, and wisdom. Rebel against the tendency to silence your inner truth. (Of course, share it with love and respect.)

7. Don’t do-it-yourself. In my book, I have a saying, “DIY is a lie.” Sure, you can do some things on your own. You can record your band’s demo in your basement, remodel your kitchen, or knit baby clothes on your own. Sometimes though, you need help. Maybe you nee to get some support for a health condition or addiction? Maybe you are trying to write a book, but don’t know where to start? Perhaps, you feel clueless about what to do when you grow up? It’s time to get some help! Hire a professional such as a life coach, counselor, or physician. Talk to a mentor. Check out your community’s resources. Also, find your tribe, whether it’s online or in-person groups. Successful people have teams. They cooperate, not compete. Reject the traditional rebel stereotype of being a loner and a rebel.

8. Live your purpose right now. Instead of wondering what your life purpose is or having angst about not living it, take charge! Think of your top three favorite activities or hobbies. Look for clues about your life purpose. Sometimes, your life purpose varies from your job. You don’t have to necessarily be paid doing something for it to count as your life purpose. Maybe you rock out on a drum kit on nights and weekends, but your day job is cleaning houses? You might be a professional, such as a dentist, who teaches yoga on the side. You don’t have to wait until your day job and life purpose are perfectly aligned. (Of course, don’t quit your day job. Please, make sure you can pay your bills.) Again, be a positive rebel by not delaying your happiness until you create some outer condition in your life.

9. Drop out of the School of Hard Knocks. In my book, I write about the path of the modern mystic. The modern mystic learns his or her lessons through daily life. Often, relationships are the most influential teachers. You quickly learn about your wounds or buttons, with conflicts causing you to grow. If that weren’t enough, there are some advanced classes such as Divorce 101, Bankruptcy 101, Cancer 201, or Unemployment 401. Through it all, you learn about how to be more compassionate, even if it’s just towards yourself. The form of your lessons might seem to vary from what others experience. Chances are though, others have had similar experiences. Maybe your suffering is not that unique? Even though it is hard work, you can choose to end your pain and sorrow. Again, rebel by choosing to be happy, instead.

10. Have a spiritual practice. Whether it’s the religion of your childhood or a path of your own choosing, find a way to connect with your version of god. Some call “god” different names such as the universe, source, Buddha, or the divine. Don’t get caught up in the labels. Discover what feels good to you. Maybe you meditate, do yoga, pray, chant, walk on fire, talk to angels, or go to church. The important thing is to live what you practice. Your spiritual life is not a separate part of your life. Go outside your four walls and practice those things that religions and spiritual paths teach such as love and compassion. Give those to yourself and others. Increasing your own inner peace and happiness helps you to uplift others. Instead of seeing the world as a hostile, unfriendly place, try viewing it as a place that just needs healing and love. (I risk sounding like a 1960s hippie with that prior sentence, but my inner positive rebel just doesn’t care.)

The previous ideas are to get you started. Create your own practices of positive rebellion. Observe if your life improves over time. Let me know how it goes. I’d love to hear from you!

Bio:
Lisa Marie Selow has a life mission of liberating as many people as possible. She is a rocker chick, life coach, motivational speaker, modern mystic, and women’s empowerment expert. Her specialty is helping you to get out of your comfort zone and gain courage to live your best life possible. She is the Hay House author of the book, A Rebel Chick Mystic’s Guide, a self-help book for brave, misfit women (or those who desire to be), which helps the reader write her own guide for living life on her terms. Lisa has been involved in the healing arts since 1998 in various roles such as massage therapist, energy worker, intuitive consultant, and most recently, as a life coach. She has studied both formally and informally with many top spiritual and personal development teachers for more than 20 years. Lisa lives in Detroit, Michigan with her husband, JT and a few, electric guitars and some very friendly, outdoor squirrels. You can find out more about her at her website:
http://lisaselow.com
Used with permission (c) 2012 Lisa Marie Selow.

If you order one copy of Lisa’s book, A Rebel Chick Mystic’s Guide, you’ll get access to exclusive gifts and discounts from her favorite rock star, spiritual and personal development friends!

One of the gifts is the e-book A Positive Rebelʼs Companion. I am honored to be one of 40 positive rebellion experts featured in this special collaborative collection. Check it out here!

Order your copy TODAY!

Donate to my SDR surgery!

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.

Donate Now

GROUND BREAKING BLOGGING NEWS – *UPDATE*

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.

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I’m Featured on We Blog Stalk!

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.

The Power of Possibility

“Start by doing what’s necessary; then do what’s possible; and suddenly you are doing the impossible.” ~St. Francis of Assisi~

Today is the nine month anniversary of my blog. It is also the day I received news that will dramatically change my life. I am a candidate for Selective Dorsal Rhizotomy (SDR), a surgical procedure performed on patients with cerebral palsy (CP). This surgery is going to improve the quality of my life in so many ways. My SDR journey will be long – one filled with many emotional and physical ups and downs – and definitely worth it in the end. Please visit my friend Frantz’s inspirational blog – the one that inspired me to send my evaluation packet to Dr. TS Park in St. Louis  – Learning to Run: My Cerebral Palsy Journey , to read more about his experience with SDR.

The story of how I found out about SDR sounds too good to be true. Luckily for me, it isn’t. It all started with the Caregiver Cruise Giveaway Contest. I saw a post about the contest on Facebook. I planned to nominate myself, but before I got around to it, my brother wrote a beautiful letter on my behalf. I asked people to vote for me and they did – big time! Thank you to everyone who voted, shared/tweeted the link, and encouraged me every step of the way. Although I did not win the contest, it led me to a friendship with Marty, from whom I learned about SDR. If I didn’t believe that entering, let alone winning a caregiver contest was possible, I wouldn’t have met Marty or learned about SDR. I would have lived the rest of my life never knowing there was a surgery available that may be able to help me. It’s sad that I, like Marty and so many children and adults with CP, find out about this life-changing surgery by literally stumbling upon it.

I have this blog to thank for reminding me about the power of possibility. When I accepted the possibility of starting a blog and turned it into a reality, a whole other world opened up to me. I became part of the blogging community and in doing so, have met so many supportive people who accept and like me for who I am. If only all of you lived nearby! I will update you as I move along my SDR journey – a journey that may allow me to do things I previously could not do, like ride a bike! Believe in the power of possibility and watch what happens. Anything is POSSIBLE!

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.

Dealing with Disabilities

“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?”

bareyournaketruth:

Dear friends,
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!

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Milestone: Seven Month Anniversary AND 7,500 Total Views

Today is the seven month anniversary of my blog. About four days ago, I set a goal to reach 7,500 total views before midnight on Aug. 4. I needed 256 views to reach my goal. THANKS to WordPress bloggers, Facebook friends, Twitter followers and visitors, I reached my goal at 11:42 PM. I am so honored and grateful to everyone who answered my call, putting up with frequent posts and tweets. This blog has been a blessing to me. The connections I’ve made are invaluable. I look forward to the next milestone!

Walk Like An Olympian: Win the Game of Life

“The thrill of victory. The agony of defeat. The human drama of athletic competition.” -Stanley Ralph Ross

This is why we love the 2012 Summer Olympic Games, officially known as the Games of the XXX Olympiad. We admire the athletes’ dedication, endurance and physical prowess. We celebrate heroic feats with cheers and fist pumps. The excitement is contagious! The Olympics represent what it means to be the best; to be a winner. Although the goal is to stand on stage sporting a shiny medal, every competitor is a winner simply for showing up. The same is true in the game of life. Kellog’s “From Great Starts Come Great Things” Olympic campaign beautifully illustrates that there can be no destination without a beginning.

Olympians train to be the best in their athletic activity. The rest of us train for the most important event of all – life. It’s hard. Everyone struggles with challenges, disappointment, doubt. So, what sets Olympians apart from the rest of the pack? They play the game and stay in it – no matter what. They meet challenges head on, go through them, and never give up! They keep their eyes on the prize. They stay in the zone. They train consistently; repeating and perfecting routines until the impossible becomes possible. The pay-off for hard work is huge. They win medals. They make history. Gabby Douglas, who became the first African-American woman to win the all-around gymnastics gold, said:
“Gold medals are made out of sweat, blood and tears.”

We can copy our favorite champions by practicing the determination, drive and passion it takes to win. Here’s what you need to walk like an Olympian and win the game of life:

1. Commitment
2. Focus
3. Intention to succeed

Commit to playing the game. Commit to achieving your goals. Focus on what you want to accomplish. Keep doing whatever it takes to cross the finish line. Have an intention to succeed. Believe in yourself. Believe in your abilities. Keep knocking on doors until one opens. Don’t give up! Train yourself to win. Shine in the spotlight. Center stage is waiting.

Remember Me

In the corners of your mind
the space between love and loss
think back to a time gone by
when love remained
at the end of the day
passion melted our troubles away

In the memories left behind
in the corners of your mind
where past loves reside…
remember me.
(c) Nicole Luongo
7/24/12.

No Regrets

Guest Post by Alicia Rades

You can’t hold onto a grudge or the past
You’ve got to make each moment last
To live life to the fullest
You can’t regret a single moment
You’ve got to learn to forgive and forget
And live life with no regrets.

Alicia Rades has been writing poetry since she was young, and spent much of her childhood filling notebooks with whatever would come to her head. She is a wife who works as a freelance writer and enjoys bike rides, cooking, and blogging. Although she wrote this poem many years ago, it reflects several things she has been trying to live by: live life to the fullest, don’t worry about the past, and live with no regrets, meaning that you have to make the most of the opportunities that life presents to you.

Visit her blog: http://aguide4women.com

Like her blog: https://www.facebook.com/pages/A-Guide-4-Women-Blog/261296463964328


Follow her on Twitter: https://twitter.com/AliciaRades

The Angst of Alzheimer’s

“In Alzheimer’s, the mind dies first: Names, dates, places – the interior scrapbook of an entire life – fade into mists of nonrecognition.” -Matt Clark

Did you ever wish you could erase an entire day from your memory? Maybe you’d like to forget the Monday that started with a flat tire and ended with a pink slip. I’m sure there are moments we’d all like to disremember. Imagine what life would be like if forgetting – the good and bad – was your normal state of mind.

My mom is one of the 5.4 million Americans living with Alzheimer’s – the most common type of dementia. According to Facts and Figures, an annual report released by the Alzheimer’s Association, “Dementia is an umbrella term describing a variety of diseases and conditions that develop when nerve cells in the brain die or no longer function normally. The death or malfunction of these nerve cells, called neurons, causes changes in one’s memory, behavior and ability to think clearly. In Alzheimer’s disease, these brain changes eventually impair an individual’s ability to carry out such basic bodily functions as walking and swallowing. Alzheimer’s disease is ultimately fatal.”

I began to notice something was wrong with my mother back in 2001.  For the next seven years, I did everything possible to convince many, if not all, of my ten older siblings what I knew in my heart to be true:  Mom had Alzheimer’s disease. I insisted Mom go to the doctor after she took a hot pan out of the oven with bare hands. When I presented Mom’s doctor with a list of strange occurrences – most notably the oven incident (which she didn’t even remember), he denied my request to refer her to a neurologist. Although an early diagnosis is beneficial, it’s often the doctor who fails to listen to frightened family members.

Most patients who receive an Alzheimer’s diagnosis tend to be in the moderate or severe stages of the disease and are less likely to respond significantly to the medications approved by the U.S. Food and Drug Administration. These drugs may help maintain thinking, memory, and speaking skills, and help with certain behavioral problems. However, they don’t change the underlying disease process, are effective for some but not all people, and may help only for a limited time.  There is no cure.

Dealing with this devastating diagnosis takes an immeasurable toll. Caring for a loved one with Alzheimer’s disease can have high emotional, physical, and financial costs. The demands of day-to-day care, changing family roles, and difficult decisions about placement in a care facility can be hard to handle. On average, Alzheimer’s and dementia caregivers provide care one to four years more than caregivers caring for someone with an illness other than Alzheimer’s disease. They are also more likely to provide care for five years or longer.

I am a caregiver.  It’s hard.  It never seems to get any easier, especially with the discord among family members. What has gotten easier is my relationship with Mom. And that is where the angst of Alzheimer’s turns into a thing of beauty.

Caregiver Cruise Giveaway Contest…PLEASE VOTE!

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!

My Wonderful Woman Interview

I am delighted to share that I am the first featured Wonderful Woman over at A Guide 4 Women. I am honored that a fellow blogger chose me to debut this new section on her site. Alicia is wonderful! Contact her if you want to nominate a wonderful woman in your life.

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