Caitlin Whyte (Host): Welcome to another episode of In Their Words, where we explore resilience community and the power of shared experiences. Today, we bring you the story of Rose Colon, an operations specialist at UPMC in Central PA. Rose's life changed when her son suffered a traumatic brain injury, leading her from a worried mother to a community leader in TBI support. We'll hear about the shock of her son's accident, the challenging, and her realization that their community lacked vital support for TBI survivors.

Rose's determination to fill this gap led to a remarkable collaboration with Dr. Matthew Wilson, a physician with his own TBI recovery story. Together, they helped create a comprehensive TBI support group made possible by the Brain Matters Fund held by the UPMC Pinnacle Foundation. Rose will share the challenges and triumphs of bringing this vision to life, showcasing the fund's role in creating a space for healing and connection.

Join us as we uncover how personal tragedies can evolve into community triumphs. Rose Colon's story is a testament to resilience and the transformative power of purposeful action.

Rose Colon: So, my name is Rose. I am an operations specialist with UPMC PHMG. I've actually been with the medical group for seven years now. So, the reason I actually took on, this was a passion project for me, which was starting the Traumatic Brain Injury Support Group, is because I have a son who suffered a traumatic brain injury in 2018. And as a parent, I found that there were not a lot of support groups around or, if there were support groups around, that information was not provided to us when we left facilities. So, I thought it would be important for other patients, family members, et cetera, to be able to have that information readily available for them and just so they know that there is support out here.

My son actually was T-boned by a FedEx truck, and he was actually trapped in his car for about an hour. They had to use the Jaws of Life to get him out. He suffered a brain stem laceration and a mid-brain bleed. So, he found himself in the hospital in the ICU for about a month. Then, they thought that maybe he would just be in a nursing home forever. And I just kept pushing and saying, "No, I don't think so." You know, Just pushing back on the providers and things and find a facility, like a rehab that would take him, because originally no rehabs would take him. They didn't think he could rehab. And we found one in Philadelphia, Magee Rehabilitation Center, which I think is part of Jefferson now. They actually helped to rehab him to where he's at now.

It happened when he was 20, but he's 26 now. Yeah, it's still pretty difficult, you know, for us and for himself, but we're navigating. Just trying to, one, find resources was hard. Advocating for him in the beginning period was difficult. I think the nurses actually were telling me that they were happy that I was there to advocate for him, because I think that they would just, like, give up. They were just giving up easily, just saying, "Oh, this is just the way it's going to be." Even there was a point where he was on the breathing machine, obviously, he couldn't breathe on his own, but in order for him to get to the next level, he had to be able to get the breathing tube out and breathe on his own for a couple minutes. And they kept saying, "It wouldn't happen. It wouldn't happen." And I was like, "How can you say it's not going to happen? You haven't even tried." So, I actually pushed for them to try, because they were just trying to put a trach in him. And I was like, "Absolutely not. Not until we do a trial run," you know? And it was risky to do the trial run, but I kept pushing it. And I was like, "We're not doing the trach unless we do the trial run." so, we did do the trial run, and then, what do you know? He was to breathe on his own, and then he didn't need the trach, and we were able to take the breathing tube out. And then, that's when we've seen more progression.

And even whenever we got down to Magee, it was one of those things too, where they were treading lightly, trying to make sure that they can rehab him, and there was a lot of pushback on the things that they thought he could and couldn't do. And I just kept having them, I just kept saying, "We're going to push," you know what I mean? "Don't say that he can't, we're just going to do it. Try it. I don't care." I'm not going to say, "My son has to be in a nursing home for the rest of his life because we didn't try."

And so, you know, going through all of that was hard and difficult as a parent and difficult just seeing your child in that type of situation. And then, like I said, after the fact, it was like there were no resources. No one really told us what to expect. Once he got a little bit better where it was like, okay, we rehabbed him, he's walking, he's talking, he's eating again, it was like, "Okay, he can go home." But no one ever said that then when that person goes home, you're dealing with a lot. You're dealing with, obviously, changed moods, behaviors, a lot of different things. You know, you have to have a lot of different specialists involved, a lot of doctor's appointments. It's a lot on the individual as well as family, friends.

So, locally, he just sees a UPMC provider for primary care. He is currently seeing a lot of other specialists down in Hershey. We don't have movement specialists and things like that. Because, unfortunately, he did have to have a craniotomy, and then a cranioplasty where they had to put his skull piece back in. And so with that, whenever it got placed back in, it caused him to have tremors. So even though he was rehabbing and he was doing great, it caused him to have really bad tremors, which causes him not to be able to work or anything like that now. He can't do a lot of things with his hands. So, the only specialist around was the movement specialist down at Hershey, which they're helping him with that. So, we just kind of kept the specialists down at Hershey at this point. And then, all of the hard work that he did, I do think that he had some really good providers, the ones that would listen and, you know, felt like, "Yeah, let's push him, let's try this, or let's try that." So, I can give them the props.

I can tell you, though, what I find is that a lot of people are not specialized with brain injuries, and every brain injury is unique. That's one thing that a lot of people don't understand. So, even though a provider may know something about brain injuries, they may not obviously know everything, because everything's a little bit different. So, how you treat a patient, it's not just one way, you know, like, "Oh, okay, this is a sore throat. This is how we're going to treat it." That's not how you treat a brain injury because everyone has different symptoms and how their brain chemistry is and how their brain is wired after a brain injury. You have to deal with personality change, like the person is never going to be who they were prior to the injury.

With him, to be honest, he hasn't still come to terms that this is his life forever now. Like, he is disabled forever and he's miserable, to be honest. Everything is very negative, and we've tried counseling, psychiatry, just trying to get him out into the community. It's very hard to take him out into the community because he goes from zero to 1,000 fast. I guess that's part of the brain injury. If he gets agitated off of something, he'll be just like a loose cannon, to be honest. It's embarrassing for us, because people don't understand that, right? You can't see a brain injury. It's invisible. So, it's not like you can look at him and say, "Oh, he has a brain injury." So, it can be really hard taking him out in the public.

For him, he is very sad because he says, you know, "I used to have my own place. I can't have my own place anymore. I can't work anymore. I can't drive." He's lost friends. He's lost family. And to be honest, it's really, really difficult to deal with anyone who has a brain injury, yet alone a traumatic brain injury, because I think they just get into that mode of "I have this injury and everyone just needs to accept this is how I am." And I get it, you know, you have to accept this is how they are, but he doesn't care about how anyone else may be going through anything because everything is self-centered. You know, everything's Dylan. It's everything's Dylan. So, it's a little bit difficult.

Host: Dr. Wilson, having his own family's TBI story, connected with Rose at UPMC. Their mutual understanding of the challenges faced by TBI survivors and their families led them to create a support group where they combine their strengths to make a difference in the community.

Rose Colon: So when I was actually the Manager of Family Care Silver Spring, Dr. Wilson used to work there with me. And he actually had his accident four months before my son had his accident. So, they both actually had their injuries occur in 2018. So, he had gone through some rehab and stuff. So when Dylan went through, had his accident, I actually was calling Dr. Wilson the entire time I was at the hospital. And he was trying to help me navigate through some things. Obviously, he was a neurosurgeon or a neurologist and lot of that, you know, you need a neurosurgeon, neurologist when it comes to brain injuries and stuff. But he was just trying to help me through all of the fears I was having, and I was asking him things about medications and things like that.

So, I spoke about this group. It went through the VP who I guess got in contact with the foundation. And at that time, Chad had reached out. He was just speaking to me about, "Oh, hey, this is great. And we have a donor who gave some money into it, you know, has an endowment, and it's for, you know, brain injuries and things like that, that we probably can use some of those monies to start your group." And he started just kind of briefly telling me a story without mentioning names. And I was like, "Are you talking about Dr. Wilson?" I had known that Dr. Wilson, when he got the money, like he got some money, he had gave money to other organizations. I did not know that he gave some money, obviously, to the foundation. And he said, "Oh, yeah." And then, we started talking about Dr. Wilson. And I was like, "I'm going to reach out to Dr. Wilson now," because we stayed in touch even when he left working at Sober Spring and went down to York, we still stayed in contact. So then, I reached out and I was like, "Oh, hey, I didn't know this, but they were telling me, you know, you have this endowment and this is my idea of starting a support group. And it would be awesome for us to do it together if you would like." And he was like, "This is a great idea. I definitely want the money to be used for something like this. This is why it's there." He wanted to, you know, discuss it with his wife and I guess they did. And they were like, "Yep, it's a great opportunity for everybody." So originally, he didn't want to be a part of it. He's still kind of like, "Hey, this is Rose's thing," but it's nice to have him present at some of the meetings. So that way, if someone has questions, he's able to answer those because I'm not clinical, so I can't answer clinical things.

So, we wanted to make it non-formal because some, I don't want to say some, but some groups, you know, they have their, "Hey, this is exactly what we're doing." Well, for brain-injured individuals, it's pretty hard for them sometimes to-- Some, they like a regimen, and some don't. And some are like, "Okay, we have to stay on task." And obviously, it's hard for a lot of people to stay on task, even keep the attention span. So, my idea in the group was just to be informal. Like, we come in, we just introduced each other. If they want to talk about their story and what happened, they can. If they don't, then they don't. I always like to try to have like a topic to discuss and then we can go from there or a guest speaker.

So, the first group was just kind of open forum. And since we're just now getting started, this started in January, we still don't have a lot of participants yet. So, our largest participant group was like eight individuals, and feedback from them was that they would like people to come in person to speak to them. So whether it's someone from the head injury program, OVR, or any of the other facilities, therapies, special select therapy, they wanted the individuals to be able to come out. So, I obviously heard what they were saying and I had set up some guest speakers. And even we had the support group last evening and we had some guest speakers from Living Unlimited. They work really closely with the head injury program that's funded through the state. So, they talk about their services and, like, music therapy, which is a fairly new thing that they're incorporating with traumatic brain injury therapies and stuff. So, it's nice to have that. Other sessions, we just did things like I had candles and, you know, you're the light of your life, and we had candles, and we just decorated candles, and we just had open forum, everyone talking about whatever they wanted to talk about.

So, there's really no method to the madness, but it's nice to know that there's people there that have similar experiences. They can talk about, you know, how they handle things. They can talk about providers they have seen, what has worked for them, what didn't work for them. There's some people who have come to the group and said, "Oh, hey, there's these resources around." And sometimes, no one knows about those resources, so it's always good to hear what else is out there for everyone? Not just my support group. There's other support groups. So, it's just been really nice so far. We're slow. You know, up and coming, but I think the more we can get the name out there and let people know, "Hey, this support group is available," we'll have more participants.

I did have a patient come yesterday that said, "Oh, hey, I found this information at my PT office." So, I thought that was nice that the PT office had put it up, but I think we need to do a little bit more advertising too.

Host: Want to know how you can get involved? Here is everything you need to know about the support group conveniently located in central PA.

Rose Colon: Yeah. So, the group is every fourth Wednesday of the month from 6:00 to 7:30 at the Fredricksen Outpatient Center. It's held in room G08. I made it an hour and a half. Most support groups are an hour. But I used to find when I, myself, would go to a support group, people would be lingering, you know, past that hour had they had more questions, they wanted more support. So, I wanted to do an hour and a half. And our goal is, once we see how this works, because we didn't know do we want it to be on East Shore or West Shore? Obviously, it's on the West Shore in Mechanicsburg. But if the group would grow and some people had, "Hey, I need to be on the East Shore versus the West Shore because of transportation or whatnot," because that also is an issue for some people, then we were discussing possibly then doing an East Shore location. And my vision is that this group is going to grow really large to the point that maybe even we do some virtual meetings as well for people who can't come out their home.

It actually has been very helpful. I feel very grateful that I work for UPMC, and they were able to put my vision into play because I always used to sit back and just be like, "Why doesn't UPMC have this?" And the fact that I brought it up, and it's all the lights turned on and they're like, "This is great. Oh my goodness! I can't believe we didn't think about this," et cetera. It was nice that people were supportive of it and thought that, "Hey, this is a great idea." And I mean it was pushed really fast for me and I was excited because ever since my son's injury I always said I want to start either a non-profit organization myself for people who need advocacy, you know, any type of assistance, different things, which I still would love to do one day. And I also wanted to start a support group, but I thought about it and didn't know how I could really form one. And then, speaking with a facilitator of a different support group, brain injury support group out of Mechanicsburg, she said, you know, "Hey, I started out just doing it myself in a library. And then, I got the information out there." So, I was thinking about all those things. But then, I spoke with, at the time, was my director, which is Andrew Brown, I started speaking with him about the group. And he was like, "I think that we can help push this along." So, that's how we got here. So, it was nice.

It actually means a lot. I really am grateful for the foundation as well and all the help that the foundation has given me and for the support group because, like you just said, some people don't even know that the foundation exists, which is sad because you guys do a lot of great things for us. And it's nice to know that you guys, you know, the foundation itself cares about the community and has these resources available. And anyone who needs support, so again any survivors, family, friends, caregivers, come out to the group, I think it will be a great opportunity for everyone to gather together, share experiences, share resources, even share phone numbers. You make friends in these groups. You know, you have someone to connect with. A lot of times people who have brain injuries or, you know, are just going through a hard time may feel alone, like if they don't have anyone by their side. And this group is one that we want you to feel like you always have someone by your side. I also make my stuff available at all times for anyone. So definitely, we want it to feel like home, and we want the word to get out that, "Hey, this is a great group, come out and join it." And no one feels uncomfortable being there.

Host: As we conclude this episode of In Their Words, Rose's journey reminds us of the profound impact one person can have on an entire community. Her work on the creation of the support group through the Brain Matters Fund demonstrates the power of shared experiences and collective action. Rose's story is a powerful testament to the resilience of the human spirit and the importance of community in the face of life-altering challenges.

Thank you for joining us on this inspiring journey. Remember, your voice matters, your story matters, and together we can create positive change in our communities. Until next time, this is In Their Words, where every story has the power to transform lives.