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Nicole Luongo | What CP Looks Like

Cerebral Palsy Awareness + Education

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  • Nicole Luongo SDR Changes Lives

    Cerebral Palsy

    How SDR Surgery Changed My Life

    Cerebral Palsy advocate Nicole Luongo vlogs about how ‘SDR Changes Lives’ one year after selective dorsal rhizotomy surgery with Dr. T.S. Park on St. Louis, on the cusp of turning 40 years old.

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    • whatcplookslike
    @worldcpday is on October 6. How will you be celeb @worldcpday is on October 6. How will you be celebrating? FUN FACT: World CP designed this logo for my #Groundbreaking Go Green for CP campaign. 💚💚💚 Learn 5 reasons to #GoGreen on #WorldCPDay at the link in my bio or go to: https://nicoleluongo.com/go-green-on-world-cp-day/ PRO TIP: You can download the official #MillionsofReasons World CP Day logo (and more resources) on their website. 😉 #CerebralPalsy #CerebralPalsyAwareness #whatCPlookslike #DisabilityAdvocate #Advocacy #FirstOfItsKind #RepresentationMatters 💚💚💚 [ID: World CP Day's official logo designed for my Go Green for CP campaign. A white background. At the top, it says #GoGreen4CP in bright green letters. Below there is a bright green lightbulb. Inside of the lightbulb there's the year 2019 in white, and below it, there are two white curved bars with three pointed indentations on top. The center is the same but filled in in green.]
    Leave a 💚 below if you agree! Find out how to Leave a 💚 below if you agree! Find out how to #WinAtLife at the link in my bio or go to https://nicoleluongo.com/how-to-win-at-life-like-an-olympian/ #NicoleLuongo #CerebralPalsy #SDRChangesLives #whatCPlookslike #GetInTheGame #MotivationMonday #Success #QuoteofTheWeek #QuotesAboutLife #QuotesToLiveBy #Winning [ID: A green background. In the center there’s a box with a black border around it. In the center of the box there is a white, round illuminated circle. Inside the box, superimposed on top of the illuminated circle, is a quote from Nicole in black text. It says: You can’t achieve anything if you’re on the sidelines of life. Get in the game! Nicole’s Instagram @whatcplookslike is below the text, in the center.]
    Life with #CerebralPalsy can be exhausting! We exp Life with #CerebralPalsy can be exhausting! We expend 5-7 times more energy doing daily tasks, so it’s no wonder we’re tired. It’s okay to take breaks. It’s healthy (for your body + mind) to take breaks. It’s necessary to take breaks. Taking breaks doesn’t mean you aren’t productive. REPEAT AFTER ME: Just because you take breaks doesn’t mean you’re broken. Click the link in my bio for some self-care tips. Or, go to https://nicoleluongo.com/cerebral-palsy-self-care-tips/ What does taking a break look like to you? 💚💚💚 #NicoleLuongo #whatCPlookslike #CerebralPalsyAwareness #Disabilities #SelfCare #SelfCareTips #WednesdayWisdom [ID: A green background. In the center there is a white, square pop up bubble with black text. At the top it says Reminder. Underneath it says: Just because you take breaks doesn’t mean your broken. There’s a vertical line under the text. Underneath, to the left, in blue letters, it says Close. There’s a vertical line. To the right, in blue letters, it says Got it. Nicole’s Instagram @whatcplookslike is below the bubble, in the center.]
    September is World Alzheimer's Month. The blog pos September is World Alzheimer's Month. The blog post (at the link in my bio) talks about what not to say to people with disabilities, especially those with Alzheimer’s disease. Let’s think before we speak. #AlzheimersDisease #CaregiverLife #Disabliities #CerebralPalsy #whatCPlookslike #ThinkBeforeYouSpeak #DontSayThat #WorldAlzheimersMonth #SFLA #Seattle [ID: A photo of Nicole and her mom from 1992. They're smiling at the camera, sitting at a table in restaurant.]
    Here’s how to chop an onion in a @vitamix. No kn Here’s how to chop an onion in a @vitamix. No knives, no tears! Well, you might cry because it’s so EASY. #NicoleLuongo #CerebralPalsy #whatCPcookslike #Accessibility #AccessibleCooking #Cooking #CookingHacks #Blenders #Vitamix
    I love meeting new people. Rob’s a great guy! DM I love meeting new people. Rob’s a great guy! DM him to help him reach his goal of meeting 10K people! #Repost @robs10kfriends with @use.repost ・・・ 5074. “I was almost 40 years old and I was like wait a minute, why haven’t I ever heard of this surgery? So it really became my life’s mission to get the word out about this surgery.” Born 2.5 months premature, Nicole Luongo came into the world at 2 lbs 13 oz. “I was my mother’s last and 11th child.” She was also born with cerebral palsy, and therefore had to have heel cord lengthening surgery at 4.5 years old. “So I believe I didn’t walk ‘on my own’ until I was 5.” Always resourceful, though, Nicole constantly found ways to get around by putting shoes on her hands. “That’s how I am as a person where if I can’t do it the traditional way, I’m just gonna find some other way.” As she grew older, Nicole graduated with her Business degree from @floridaatlantic; however, she’s been most fulfilled when being an advocate. At 39 years old, she underwent a selective dorsal rhizotomy (SDR surgery), which changed her life. Afterwards, she had more mobility, including better abilities to climb stairs unaided and walk backwards. Wanting to spread the word, she shared her story in @huffpost only after staying persistent and reaching out to @ariannahuff directly. Nicole also managed to get 48 of 50 states (2 of them forgot) to light up green for CP in March of 2019! Now, though, she’s thinking of other ways to spread awareness by joining groups like @diversability and thinking of starting her own podcast! So nice to meet you, @whatcplookslike! #10kfriends #philly #fortlauderdale #florida #cerebralpalsy #advocate #resourceful #fau #sdrsurgery #huffpost #gogreenforcp #podcast #whatcplookslike #somegoodnews #robs10kfriends #meetingpeople #SDRChangesLives • How we met: Nicole came across my project via her friend, @imtiffanyyu (#3846), and then DM’ed me to meet! • Swipe to hear more about how Nicole spread the word about selective dorsal rhizotomy (SDR)! 🌎✍🏼 • Click the link in my bio if you’d like to support me via Patreon! 🙏🏼
    From my blog post (link in bio): “The Disability From my blog post (link in bio): “The Disability Pride flag was designed by Ann Magill, a disabled woman. The flag has a black background with five zig zag lines diagonally across the flag in blue, yellow, white, red, and green. The lines symbolize a lightning bolt and each color represents the following: The black background represents the suffering due to ableism or violence; it’s also the color of rebellion and protest. The lightning bolt represents how individuals with disabilities must navigate barriers, and demonstrates their creativity in doing so. The five colors represent the variety of needs and experiences in our community: Mental Illness, Intellectual and Developmental Disabilities, Invisible and Undiagnosed Disabilities, Physical Disabilities, and Sensory Disabilities. The parallel stripes represent solidarity within the disability community, as well as all of its differences.” Click link in bio to read my Disability Pride Month poem or go to https://nicoleluongo.com/disability-pride-month-poem/ [ID: A picture of the Disability Pride flag designed by Ann McGill. The flag has a black background with five zig zag lines diagonally across the flag in blue, yellow, white, red, and green.] #Disabilities #DisabilityAwareness #DisabilityPride #DisabilityPrideMonth #Poetry #Poems #CerebralPalsy #whatcplookslike #RepresentationMatters
    So honored to be a part of this! #Repost @r.a.r.e. So honored to be a part of this! #Repost @r.a.r.e.advoc8 with @use.repost ・・・ In TWO DAYS I’ll be joined by @dramykenny, @cara_yarkhan, and @whatcplookslike to KICK OFF the 9 conversation Power in Pride Celebration for Disability Pride Month with our first one diving into disability pride—what it means to us and why it’s so essential to dismantling The Ableist Society. This is a free grass roots DISABLED RUN event for all across the world to attend—we will even have some time at the end for the audience to share and ask questions as well. Thanks to our sponsor @diversability, each conversation will be held in the Diversability Clubhouse—RSVP link is in my bio where you can sign up for a clubhouse profile if you don’t have one! (https://bit.ly/PowerInPride1) This year threw me a lot of curve balls, so I’m truthfully so proud to say I didn’t give up on my goal to make Disability Pride Month something we can’t wait to celebrate. I’ve been so caught up in life & didn’t get a chance to really preview what we have coming up all July long, so you’ll have to just come along for the ride and tune in to find out 🖤 see you next Friday for Kick Off!! — [ID-a black background has two disabled zombies with neon skin dripping off their bumpy bones work together to hold up a sign that reads “the power in Pride celebration for disability pride month kick off with…” above 4 round pictures “tacked” to the sign, from left to right; Marie Dagenais-Lewis, Dr. Amy Kenny, Cara Elizabeth Yar Khan, and Nicole Luongo. Below the pictures are the words “July 1st @ 2 PM ET/11 AM PT in the Diversability Clubhouse. RSVP @ https://bit.ly/powerinpride1 Live Transcription Available” above a red, black and white logo that reads “grant winner Awesome Foundation awesomefoundation.org”. Centered at the bottom of the graphic are the words “thank you to our sponsor Diversability” in white.] — #DisabilityPride #PowerInPride #Grassroots #DisabilityPrideMonth #DisabledAndProud #FreeEvent #Clubhouse #CelebrateDiversity #Disabled #CerebralPalsy #whatcplookslike
    Dr. Park changed my life nine years ago today when Dr. Park changed my life nine years ago today when I SDR (selective dorsal rhizotomy) surgery) in St. Louis. How do you thank the world-renowned doctor who had such a profound impact on your life? Well, ever since I found out about SDR (about six months before my operation), I’ve shared my journey so other adults and families with CP children are aware, can choose this life-changing surgery, too. Learning about Dr. Park, SDR put me on the path to advocacy. I’m proud to be the first (and only to my knowledge) person to publish an article about SDR on @huffpost in 2014. So many adults + children (just the one’s I know of; I’m sure there are more) from around the world have had SDR because I got mad, and decided to do something about it. I didn’t think it fair that people in the CP community stumbled upon this information — just like me. Hopefully, they find out about it much sooner than I did. I was almost 40! Want to learn more? Click the links my bio or visit my website at nicoleluongo.com. P.S. This picture was taken at my four-month follow-up appointment after my surgery on 3/29/13. 💚💚💚 #NicoleLuongo #DisabilityAdvocate #Advocacy #whatCPlookslike #CerebralPalsy #LifeChanging #MakeADifference #SDRChangesLives #STL #ThankYou #UseYourVoice #MyWhy❤️ [Image description: A photo of Dr. Park and Nicole taken at his office at St. Louis Children’s Hospital in 2014.]
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