NICOLE LUONGO: Author, Poet, and Disability Advocate.
Biography:
Nicole Luongo is an author, disability advocate, and writer. Her work has been published in The Huffington Post, The Mighty and Yahoo! She’s well known in the cerebral palsy community for being an advocate for the selective dorsal rhizotomy (SDR) surgery which is a procedure she underwent as an adult.In 2019, Nicole became the first person ever to get at least one building, landmark, etc. in almost all 50 states to light up in green on National Cerebral Palsy Awareness Day AND on World Cerebral Palsy Day. You can hear more about this remarkable achievement when I chat with Nicole on Episode 20 of the Raising Kellan Podcast.
Fact File:
1) Full name: Nicole Luongo2) Birthday: June 93) Place of Birth: Hollywood, Florida4) Education: Florida Atlantic University5) Career: Writer/Influencer6) Favorite Color: Purple7) Wish for 2020: To see everyone around the world healthy and well!
Nicole Luongo
Contact:
website: https://nicoleluongo.com/Facebook @ https://www.facebook.com/OfficialNicoleLuongo Instagram: Whatcplookslike
Transcript
Kellan Julal (00:06):
Welcome to this episode of Raising Kellan Podcast, Motivates by and about raising kids with special needs.
Marsh Naidoo (00:18):
Hi guys. Welcome to episode number 20 of the Raising Kellan Podcast. I am your host, Marsh Naidoo. What better way to celebrate number 20 than to talk with Nicole Luongo. Nicole Luongo is an author, disability advocate, and writer. Her work has been published in the Huffington Post, the Mighty, and Yahoo. She is well known in the cerebral palsy community for being an advocate for SDR or selective dorsal rhizotomy surgery. Welcome to the show Nicole.
Nicole Luongo (01:10):
Hi! It's so great to be here. Thank you
Marsh Naidoo (01:13):
Nicole. You are well known for saying children with cerebral palsy become adults with cerebral palsy. They need help and their stories need to be told as well. Tell us about you, Nicole.
Nicole Luongo (01:32):
Well, I'm an adult with Cerebral Palsy. I'm actually going to be 47 and about a month from today and I just kind of fell into advocacy work once I heard about selective dorsal rhizotomy surgery and that's how we met. And what happened was I was finding that there were so many people who did not know about the surgery and when they found out about it, they couldn't understand why the information is not available. So I pretty much, even before I had my surgery, cuz I had to have a fundraiser online for myself for six months leading up to my surgery. And I was telling people about it even before I had surgery. But after I had the surgery and went through my physical therapy and recovered, I just was on a mission to get the word out. And I'll never forget it. I was trying to get published on the Huffington Post cuz at that time they had a blogger site where bloggers can contribute but I couldn't figure out how to get in there or how to get an article published. I would try to send them pitches and I really wasn't successful so I went straight to the top. At that time, Arian Huffington, she created the Huffington Post. Now she's not associated with them. She now has Thrive Global. But I sent her a message on Facebook
(03:07):
And the day that she responded to me, I cried because I told her my story and I told her, and I'm gonna cry now I'm thinking about it. I told her that I had read a book about becoming a blogger on the Huffington Post. And I said that I thought that was a goal of mine. And she said, Yes, we'd love to have you. And I cried.
Marsh Naidoo (03:28):
Is that when you started writing Bare Your Naked Truth? Was that the start of it?
Nicole Luongo (03:35):
Well, that was actually the start of my blog. But back then, my gosh, how many years ago? That was a long time. Now back then I didn't know about the surgery. Be like when I started my original blog, I can't remember how many years. It's been a while. But when I found out about the surgery in late 2012, yeah I did. I still had, you're right, I did still have that extension. But because I started writing and getting published and people, knew who I was, I transformed. I created my website all by myself. So I revamped it and wanted to make it more fitting to who I was and represent me and make it look more professional and have a place where people can go. Cause I'm sure, as you know, cause your son also had the surgery. Yes. People are asking you questions and I finally said I need to make an FAQ page or something because people are messaging me. And I would get messages from time to time from people who would say, my daughter had the surgery because of your article. Adults who have had the surgery who I'm friends with, and people in different countries. It was incredible. I wish I had the number of people. There's no way for me, only Dr. Park would know if they said to him then they have some people who were very proud to go meet him and say, Nicole, we found out about you from Nicole. And he's very thankful for that.
Marsh Naidoo (05:12):
Yes. So because that's how I heard a few originally was through the selective dorsal rhizotomy site
Nicole Luongo (05:22):
What did you do when you saw my story? Did, had you heard of the surgery before?
Marsh Naidoo (05:28):
So originally we are from South Africa and my therapist in South Africa had worked with Dr. Warwick Peacock who started this technique in Cape Town. And that is who Dr. Park worked with in his early on. But Dr. Park was the one that refined it from a multi-level surgery to a single-level laminectomy. Right. So long story short, I mean a talented surgeon that has given many children as well as adults giving them improved mobility and function. How did you find out about selective dorsal rhizotomy?
Nicole Luongo (06:17):
So who performed your son's surgery? Dr. Peacock?
Marsh Naidoo (06:20):
No, no. Dr. Pock
(06:21):
I thought Dr. Be did but
(06:25):
That was in 2015.
Nicole Luongo (06:28):
Okay. So he had it a couple of years after me because I had it in 2013. The funny thing is my mother passed away three years ago, she had Alzheimer's. So I wasn't looking for anything. For me, what happened was I went online, and are you on Facebook?
Marsh Naidoo (06:47):
Yes.
Nicole Luongo (06:47):
You know how sometimes you'll see things pop up, Now they're sponsored ads. It wasn't an ad but it said that it was a caregiver contest. And they said that whoever won, would get 10 hours of care for their loved one and you would get to go on a cruise, which I didn't care about any of the other stuff. My family was having a hard time getting care for her and being able to afford it. So I wrote an email to some of my family members and I said, Hey, I'm thinking about you had to write something up. And before I knew it, one of my brothers who's incredible, nominated me and he wrote something and within an hour or something, I think I was in the first place or it was crazy cuz I started getting people to vote for me. But I would check my comments just to make sure I responded to people, should anybody happen to even see my entry. Because I didn't think anybody would. Somebody from Dr. Park's group left me a message and get this. He said, I'm an adult with cp, I'm a caregiver for my mother who has Alzheimer's and I'm the youngest of 13 children. I am an adult with cp. I was a caregiver for my mother at that time. She had Alzheimer's. I am the youngest of 11 children.
Marsh Naidoo (08:17):
Oh my goodness.
Nicole Luongo (08:18):
So he said that his sister nominated him, but when he read my entry, he told her No, enter me. I want this woman, I want this woman to win. And I said to myself, Who is this person? I need to find this person. So I clicked on his name to go to his Facebook profile and for some reason it's weird it wasn't working and that really never happens to me. So I said, I'll find this guy cuz I can do it. I went on a search and put him in there and lo and behold it pops up that he has his own nonprofit in West New York where he helps adults and kids get the equipment they need. So I read his bio and it mentions the surgery. I had never ever heard about it. So I went to Dr. Park's group, just curious honestly.
(09:17):
Cause he, oh you know what he told me, his name is Marty. He doesn't really like a fanfare. So his name is Marty. And he told me that he told people in the group to vote for me and that Dr. Park voted for me. And I didn't know Dr. Park, I didn't know anybody in that group, nothing. So I went into the group and posted a short video just thanking them for whoever who because I always wanna thank people. So while I was there, you've been there, you can't help but you start seeing posts and I started reading and I was like, what is this? Cuz all the stories were just incredible. And I would distinctly remember my sister said to me, Well aren't you gonna try to get it? I said No. I said My insurance isn't gonna let me do that, go out of state. But obviously, I <laugh> change my mind because I started communicating with no less than 10 of Dr. Park's adult patients. Everybody was just, some of them would message me and say, Hey, I was a patient. And it just took off from, I just could not believe what I was reading. Not only the adult stories of adults but the children and how much better they were doing and just all, I just couldn't believe it.
Marsh Naidoo (10:45):
What went through your thought process, Nicole? That must have been a big decision to make.
Nicole Luongo (10:52):
Actually it probably was one of the easiest decisions I've ever made. The hardest thing was I'm on Medicare HMO. I didn't think I was gonna be able to have it because I don't have any money. I can't afford that. But I found a way around it but it took me months and I almost had a nervous breakdown honestly doing a fundraiser thinking I was gonna have thousands and thousands of bills and all this. But no, it was very easy for me to make that decision because all the people I talked to, they were so thankful for having the surgery and everything they told me, it all matched with what I read about Dr. Park, what they said about Dr. Park, what they said about how the surgery changed certain things for them. And some people were so nice that they would even talk to me on the phone.
(11:51):
And I even have relationship where I got a mentor where we just bonded quickly. He's an adult too. And actually I met him in person because his parents live in part of Florida where I was, My mom was so alive and thank God she met Patrick and Patrick was amazing. He sat down and he said, I'm gonna tell you my story. And we're still friends to this day and I'm so grateful because it's a community of people who, they just really care and they're passionate and I'm just the kind of person, if I know about something that could help anybody in any way, whether it's a small way or a big way, I'm shouting it from the rooftops.
Marsh Naidoo (12:42):
Exactly.
Nicole Luongo (12:43):
And here I was 39 when I found out about the surgery and at that time the cutoff age for adults was 40. And I thought what am I gonna do? But I did ask them, I said look like if I can't have it. And they said no you, you're okay if you're 41 or whatever. But since that time has had such good results with his adult patients that now they age to cut up age 50.
Marsh Naidoo (13:12):
I've seen that. I've seen that.
Nicole Luongo (13:14):
And so yeah,
Marsh Naidoo (13:18):
Obviously your therapy was an intensive load of therapy after the surgery, but where are you now physically, Nicole? Do you feel that spasticity anymore? What is that like for you?
Nicole Luongo (13:32):
Well the best way you can describe it is anybody who doesn't know me. And I have YouTube channels where people can go and see how I walk before how I walk. Now if you did not know me, you would definitely know that I had cerebral palsy because it would smack you right in the face. You couldn't miss it. Now there are some people who probably could not tell, but maybe if you're a trained professional or even people who aren't trained, you might see a little bit of something. But what it did for me mainly was it totally changed my gait to where I have more normal gait. Cuz I used to, I don't know if they call it sway but swing go over this way and then my legs would go inward a little bit. Cause the spasticity and the weight. Yes. Yeah. So I walk definitely much more heel to toe motion.
Marsh Naidoo (14:32):
What about things like musculoskeletal pain or discomfort, back pain, knee pain,
Nicole Luongo (14:39):
I never had any pain before. The only time I would have pain is if I did too much walking. And now my lifestyle doesn't require that I do a lot of walking and if I do some, I mean I will be sore but I think that's normal anyway cuz I exercise but I'm not a walker who's walking around town and things like that. But I'm one of the lucky ones because a lot of people experience pain with CP and honestly I really didn't as a child or even as an adult.
Marsh Naidoo (15:13):
So tell me about I can shine and one of the things on your bucket
Nicole Luongo (15:18):
List, what I like about you is you do your research. You do because you didn't ask me for anything, any beforehand, any questions that I would've answered anything. But I have to tell you, a lot of people don't do what you do. So you, you're shining right now, let me tell you. I'm honest with you there. Okay. So what happened was I've never been able to ride a two-wheel bike and I told Dr. Park, that was one of on my bucket list. I said, Do you think it could be possible? And he said he thought it could be. So I found this, I'm trying to think of where I even found it. I researched stuff. I don't think I found it out in the group. I could have, I don't know. So there's this great nonprofit called I Can Shine and they have, I think there's an engineer who designed, it's how they teach what they do.
(16:18):
They have something that they like the two wheels that they put on the back of the bike and it's different from anything else but it's basically for adults and kids who have any kind of physical challenge or even autism, anything where they have special needs. And they had a camp close to where my brother lives in Kansas City and they had one in Baldwin City, Kansas. And he agreed that cuz he would've to drive me. It was like, I think a couple hours every day for five days and it started on my 41st birthday. And let me tell you, that was the hardest thing that I have ever done in my life.
(17:02):
Probably maybe you saw some of the videos in that blog post or that you read cuz it chronicles And if you saw my legs you would've thought somebody beat me. Literally beat me up because I kept tilting. So I would put my leg down because I was an adult in there with all kids, which is fine. So the kids didn't really, I don't think they didn't get it if they were gonna fall, I don't think many of 'em did but me, I was like I'm not falling, I'm putting my leg down until the spoke would get me in the lens. But anyway, so it was a five day journey and by the end of it I did ride a little bit. Now I cannot ride today on my own cuz I would need more help and I would need a bike. So I always tell people cuz people just assume, oh you could ride now. I'm like no I just rode for a couple minutes or whatever cause I finally got it. But it would take more work. But we can say that I accomplished something that I never ever thought and when I first did it, cuz they start you out in the gym and you can't go outside and until they feel you're ready. And when I did it for the first time, I cried. My brother was in the stands and I just said I need a minute. Cause I mean
Marsh Naidoo (18:19):
That's a big accomplishment.
Nicole Luongo (18:22):
I never thought he would and I don't think I realized I would be as emotional as I was. But it's almost like everything just, you know, cuz I didn't even realize I was doing it. Like they said, Oh there she goes cuz they have people that run behind you. And I heard them say, Oh she's like, I could hear my brother go. And then all of a sudden it's like you're kind of like you notice around you that okay well I'm kind of like doing this. So I encourage anybody who you have a child or you even yourself or whatever, look into them because they do great work.
Marsh Naidoo (19:04):
Now Nicole, what I love about you is that you are not a person that sits still. You are not sedentary at all. <laugh>. Tell us about what you love doing. I'm not gonna say anything. You say it.
Nicole Luongo (19:17):
Well I don't know how much you've seen, but I'm crazy about cooking in my Instant Pot <laugh>. I have two of them. So that's one of the things I haven't done much lately with them. I also have the air fryer lid, so I've been using that. But if anybody, I'm on Instagram at what CP looks like, I also have a verified Facebook page. That's kind of where I post those recipes cuz it's fun to do. I'm a big proponent of exercise. Yes. So I exercise almost daily. I mean I do take days off cuz it's important to rest. But that's something that I do. I'm trying to think, is there anything else you might be thinking of that? Well I have a blog and I write for my own blog.
Marsh Naidoo (20:06):
You write from your blog. And guys, I just wanna let you know you can check out Nicole on nicoleluongo.com, that's where you'll find her blog at. And also I'm really interested about finding out about you being an author and the book of poetry.
Nicole Luongo (20:29):
Oh thank she wrote, thank you. Actually my book is going to be 20 years in print in two years and well since you can see it, I'll show you. It's called Naked Desires and it's a poetry book and most of the poems are love poems. But actually since you asked me, I was looking through and I picked one that I think would be appropriate for the times that we're going through. And honestly this one probably, I don't know if I've ever read it before. I mean I may have had a poetry reading, but normally when people buy the book, they love the love poems and they comment. So I don't know if this many people have heard this one. So I could read this one for you if you'd like me to. I
Marsh Naidoo (21:16):
Would love that
Nicole Luongo (21:17):
<laugh>. Okay, well in honor of you, this is called My World. Take my Hand and I'll show you my world. A lovely place without death or pain. A place where everyone is treated exactly the same. You can't get to this place without me or it is only I who can see its beauty. I want to take you to my beautiful place or nothing matters. Not even money, power or race in my world it is love that reigns supreme to some this may sound like a dream and if it is, I'll take it because in my world you need love to make it.
(22:01):
Beautiful.
(22:02):
Thank you. Thank you. Why the call? It's really seems like a world away. When I wrote this, I mean I wrote the poems over a three year period and now you know what I do now. I mean I don't really write poetry anymore. I write more for content for people with cerebral palsy or
Marsh Naidoo (22:25):
Guys we're gonna take just a short break right now. And while we do that I have a huge ask of you kindly leave us a review on your podcast provider that allows this podcast to rank and be found by the algorithm so that other parents searching for a podcast talking to parents of kids with special needs are able to find it. So again, a review will sincerely be appreciated. We're gonna head back to our conversation with Nicole in which she talks about her motivation as well as inspiration for her project last year called Go Green for CP.
Nicole Luongo (23:15):
I started getting increasingly frustrated every year. March is cerebral palsy awareness month and March 25th is National Cerebral Palsy Awareness Day and the US only. And then in October, like you said, it's world CBR Palsy day. But I noticed whenever those two days would come around I would hear nothing about it on for the local news, the national news, there was nothing. But yet I would hear about National Pizza Day and I said, you know what, I'm getting tired of this. And in October, on October 6th, 2018, actually the first lighting I ever got was the great will in Seattle. I found a sponsor to sponsor the fee to do the lighting. And that happened then you know what, I don't know what happened but there was a fire under me and I was going through some rough times at that time in my life and I needed something to do, something to feel like I was contributing and doing something. So I said, you know what, if I could get one lighting, maybe I could get more lightings. And I'm telling you what, I had 30 lightings in 30 days and I said something's going on here. The universe is telling me this is working. And I had a lighting in all 50 states but at the last moment two of 'em didn't happen and I didn't find out until after the, It takes a lot of work. You can't even imagine.
Marsh Naidoo (24:57):
I tell you what, I try to, there's a bridge that crosses over the Mississippi from West Memphis to Memphis. So basically from Arkansas to Tennessee. And I tried to get them to light that bridge. Which
Nicole Luongo (25:14):
One? Cause I may have contacted them I'm sure I did. Cuz I've contacted,
Marsh Naidoo (25:19):
If I should say the name, there's like a nonprofit that does the lights and I'm like, my God. I said, you know what, I don't have that but would you consider maybe something? But they're like, you know what, we just can't. But hopefully this year we have enough time to work to towards it. But I know well listen
Nicole Luongo (25:47):
If you need help just cuz I don't do that anymore. Cuz I did it in March and I did it in October and it took six months of my life honestly. And for world cp day I had lightings in three countries in addition to the, And it takes so much work that I said I loved that I did that, but I have to do other things for myself. Yeah. And I was the first person who had ever done that had never been done. There are people doing great work on the CP community and they have gotten lightings, but one person has not ever gotten one lighting in all 50 states. I had 48 states, so
Marsh Naidoo (26:34):
That's amazing.
Nicole Luongo (26:35):
And I had more than one people can go on my website and go to green for CP and you'll see the whole listing.
Marsh Naidoo (26:42):
So Nicole, this is to bring about awareness of cerebral palsy. That's basically the largest what? 17 million?
Nicole Luongo (26:50):
Yeah, it's the most common disability in childhood. Like the most common period. But we never hear about it. It doesn't make any sense. And they should still continue to, when it's breast cancer awareness month, what do we hear about pink? We hear and it's automatic. That's my point. Nobody has to do all this. I spent hours upon hours upon hours to do what I did. It shouldn't have to be that way.
Marsh Naidoo (27:20):
No it doesn't.
Nicole Luongo (27:22):
So that's why Yeah, for awareness and cause you have you, how old is son?
Marsh Naidoo (27:28):
He is seven.
Nicole Luongo (27:30):
He's seven now. How amazing would it be for him in his lifetime to hear that on TV that hey, today we're celebrating national cp day. I mean that incredible, right?
Marsh Naidoo (27:43):
It, let's just pretend here you have $10,000 in your hand. How would you spend that <laugh>?
Nicole Luongo (27:52):
How would I spend it? Oh boy. Don't, I'm a big techie person, so geez, you know what I, geez. I mean, I was gonna say maybe I take a trip, but you can't go anywhere now (Covid). But if I could go somewhere, I would like to go to places that normally I wouldn't be able to go to cuz I couldn't afford it. Maybe I'd move. I don't know. Cause when you have freedom like that, what would I do? I mean, my mom's not alive anymore. So if she was, I would use it to help her, some of it to help her. Snuck that one in <laugh>.
Marsh Naidoo (28:43):
I, Let's see, what else have I got written down here? We talked about, I can shine about, Do you still do your ballroom dancing or is that something
Nicole Luongo (28:57):
Well I miss it and I used to do it even before what you saw. But yeah, that the place that I was going to, it's no longer there and I miss it. But it's kind of for me, because I have cp, I'm very, you gotta find the right person or the right mix because I'm always conscious of maybe I'll slow the class down. And most of the time the instructors, they don't care and the people in the class don't care. But cause you know how they switch, you have to switch partners,
Marsh Naidoo (29:35):
How
Nicole Luongo (29:37):
Positive. And if the partner doesn't know me, I'll say look and cause sometimes they will, some of them are not very good and they'll just be like whipping you around. I was like, I can't do that stuff now. I'm gonna fall. But yeah, ballroom dancing, it's so much fun. And I could do it before surgery. A lot of people may think I couldn't dance before, but I'm dancing because of the surgery. No, that's not the case. But what happened is because of the surgery and because I don't have spasticity, certain moves are a lot easier to just to move in your body. It's just a lot easier.
Marsh Naidoo (30:12):
So you are a talented person, Nicole. You love your right, you love your writing. You are a author as well as a disability advocate. Is there anything else in that mix that I haven't mentioned?
Nicole Luongo (30:27):
Yes, what you're doing. That's the number one thing that I wanna do, but I just haven't kind of figured out how to do it.
Marsh Naidoo (30:35):
Podcasting.
Nicole Luongo (30:36):
Yes. So you got to get, help me with that and I'll help you with that bridge. Or if we can't get the bridge, we'll get something else in Tennessee.
Marsh Naidoo (30:44):
Are you serious? It's ok. I would gladly help you. I would love to do that.
Nicole Luongo (30:48):
I bought a microphone and then yeah, I got tripped up with now you don't, Now there's different ways, but with the software and I'm like, I don't, Yeah, so
Marsh Naidoo (31:04):
Well listen, I will gladly show you what I know and I try. This is, from my perspective, this has been a awesome way for me to meet people like you, culture, form connections within the community, and also just to spread the message out it.
Nicole Luongo (31:23):
And how long have you been doing it now?
Marsh Naidoo (31:25):
Oh my goodness. Since last September. I actually got into this because of a young man that came into one
Nicole Luongo (31:33):
Night. Oh, I listen to that. I listen, that's such a great story. I listened to that episode.
Marsh Naidoo (31:39):
So that's how I got into it. And believe it or not, that young man is now going on to do his own show or own podcast.
Nicole Luongo (31:49):
Really?
Marsh Naidoo (31:50):
That's what it's all about. It's about community and it's just about getting the message out there
Nicole Luongo (31:57):
For
Marsh Naidoo (31:58):
Not only kids but for adults as well.
Nicole Luongo (32:01):
Oh yeah. And if you haven't noticed, I have the Gift of Gab. I was Toastmasters for 10 years. I used to give speeches. I have interviewed people on my Facebook page and I would love to get back to that someday. I also listened to your episode with Levi and his mom. Oh
Marsh Naidoo (32:19):
Man.
Nicole Luongo (32:20):
And she said, you were such a nice person and she's totally right cause I've never met you before. I didn't have any doubt, but I told her, I said, Levi is like, what is he 11 going on 40? I said, I was like that too. So she,
Marsh Naidoo (32:40):
Oh my God, Nicole, it's this absolute pleasure meeting you. And
Nicole Luongo (32:44):
It was great.
Marsh Naidoo (32:45):
I would love to, I mean, I'm serious. I would love to meet you again and talk in with you
Nicole Luongo (32:54):
And definitely listen, we're friends now. I mean, we were following, but I mean on social media, you don't see everybody's how it is. You don't really get a sense of people. It's hard unless you develop a relationship with them.
Marsh Naidoo (33:12):
Oh me. Well, Nicole, it's been a pleasure. The listeners, how can they get a hold of you or how can they follow you, Nicole?
Nicole Luongo (33:21):
The best way is to go to my website, nicoleluongo.com. And you'll see all my social media pages, YouTube channels, everything is there. And if you can't remember my name and you get to one place, but I'm, I'm the same on Facebook. Nicole won ago. But I have a what cerebral palsy looks like Facebook page. I have a Go Green for CP on Instagram. I am what CP looks like at what CP looks like. I'm sure you probably put this in the blog post probably What you
Marsh Naidoo (34:06):
Doing? I'm gonna go
Nicole Luongo (34:07):
In and on and on Twitter, I'm go green, the number four, CP
Marsh Naidoo (34:15):
Nicole, it's an absolute pleasure. And until we see you again, my dear.
Nicole Luongo (34:20):
Thank you. See you soon. Stay safe in Tennessee. Okay,
Marsh Naidoo (34:25):
I will. And you likewise. Okay,
Nicole Luongo (34:27):
Thank you. Bye. Thank
Marsh Naidoo (34:29):
You. Bye bye. Good night now.
Nicole Luongo (34:32):
Good night.
Marsh Naidoo (34:35):
We have come to the end of another episode of Raising Kellan. And again, guys, please leave a review for us on your podcast host. And until we see you the next time, always remember to get to the top of your mountain. This is Marsh Naidoo signing off.