Hope for Minds, Help for Dads

Raylene Lewis: [00:00:00] Hi there, and thank you for joining us on AVM Alliance, a pediatric stroke podcast for families and friends whose lives have been affected by traumatic brain injury, brain vessel disease, or stroke. The purpose of this podcast is to focus on the kid's side of brain injury with honest talk, news,

information and discussion for our community. Being a parent of a medically complex child is an extremely difficult path to suddenly find yourself on. I'm Raylene Lewis and my son Kyler suffered a hemorrhagic stroke at age 15. Thank you for joining us. In today's episode, hope for Minds Help for Dads, we're going to be talking about a new youth medical clinic that just opened up this past November for children that are suffering from cerebral palsy, traumatic brain injury, and stroke. We're gonna be visiting with Tim Siegel, who started Team Luke. Hope for minds. After his son's sudden golf cart [00:01:00] accident, and we're gonna end with a short discussion on the need for celebrations even in times of suffering.

As we look through chapter three of our current focus book, suffer Strong by Katherine and Jay Wolff. In today's news, I want to talk about the Aviv Clinic. Dubai, which just launched a highly specialized medical program for kids ages eight to 15 who have suffered brain injury. The program uses hyperbaric oxygen therapy, H B O T to improve cognitive, emotional and behavioral symptoms.

The new treatment is backed by a study which validates H B O T protocol as an effective treatment. So using hyperbaric medicine to deal with specific brain injuries in children is still a rather new concept. The medical program study was recently published in Nature Scientific Reports, and it demonstrates the effectiveness of H B O T treatment in healing damaged brain tissue.

The published data shows H B O T improves [00:02:00] cognitive and behavioral function as well as quality of life in pediatric patients. And this happens even if the treatment is years after receiving the initial traumatic brain injury. One of the most surprising findings from this study was the structural brain changes that were observed and visible on an MRI in the areas where the brain had known to be affected by the traumatic brain.

This shows that the use of hyperbaric medicine can be an effective treatment for children who have been affected by a traumatic brain injury years before my own child ever entered the world of tbi, I, I began following Tim Siegel and the journey with his son, Luke. I came across his page. Pray for Luke Siegel one day while scrolling through Facebook.

I have with me today Tim Siegel, who started the nonprofit organization. Team Luke, hope for minds. Tim, thank you so very [00:03:00] much for joining us today. I've been following your page since, I guess, 2015, long before my kid was diagnosed with brain vessel disease. Can you start by, by telling your story? 

Tim Siegal: Sure.

I was the tennis coach at Texas Tech from 1993 to 2015. I decided to resign July 8th, 2015 to spend more time with my children. and 20 days later I got a phone call that no father ever wants to receive, that my son Luke, was in a golf cart accident. I found out less than an hour later that the golf cart landed on top of Luke's chest.

He suffered head and chest trauma, was in cardiac arrest for seven minutes and, and suffered a, a major brain bleed. And we spent 44 days in Lubbock for a months to cook Children's Hospital in Fort Worth, and Luke did suffer an anoxic and traumatic brain. . Wow. 

Raylene Lewis: That's, that's, it's just an overnight life-changing event.

What are some things that you want parents [00:04:00] to know about when they find themselves on a, just a completely different path than the day before. 

Tim Siegal: You know, when this first happened to us, there was no blueprint, there was no what we're supposed to do next when we left the hospital. And so what we are now able to do is we, we provide to, to parents a resource guide, sort of from A to Z what to expect next.

But I think the thing that, that I tried to impress upon parents is that simply that the brain does heal my child, my son. improve the most in year six, even though we are, we've been told by so many that after a year and a half, the improvement, you know, disappears. And so I think number one, that the brain heals, number two, to never give up hope.

And, and number three, and this is the big one, and that is that when your child has a brain injury, it's, it's imperative that your child doesn't just, that you don't rely just. The nurse or that [00:05:00] the child is in a wheelchair or in bed, your child needs to be upright as much as possible. Talk to your son or daughter as if he understands.

And I did that with Luke every single day, and I, I was convinced that Luke understood it wasn't until. One year later, I asked Luke to move his tongue. If he thought our New Orleans Saints was going, were going to win. He moved his tongue. Oh, and, and I, I was convinced that Luke was gonna speak, although we were told that Luke would never use his limbs, never use his voice, or never open his eyes.

He did all three. And I believe that therapists, nurses, and doctors were extremely important in Luke's. Last six years, but to me, the most important people were family. And so my suggestion to moms and dads out there is be around your son or daughter as much as possible. Talk to him or her as if he understands.

That's incredibly important. 

Raylene Lewis: I could not [00:06:00] agree more. I think that the brain is just such a complex, you know, organ. There's just still so many things that we, that we don't know about it. You said that you're putting support groups together, that you've got a support group for dads coming, which I think is, is so, so important.

Sibling Support group. Can you tell me a little bit about how the format. For that support groups, how they run and how somebody could get involved if they wanted to participate after at the first of the year when the, when the new ones are starting? 

Tim Siegal: Yes. Well, well, we already have now two support groups, or actually three.

One is a support group just for parents to talk. Amongst each other and help each other. We also have a support group once a month where we have a speaker come in and talk about whether it's nutrition or therapies or anything. And so we, we do that. And then of course, , we have one for siblings and, and we have one of our staff members helps lead that.

And then mine will start in [00:07:00] January. And, and I'm just looking forward to mine where I can just talk to fathers because we know that most of the time in my experience of four years now is that the fathers are working and also the fathers tend to be a lot more uncomfortable in how to deal with their child who's.

The way that they thought their child would be and, and whether it's giving meds, whether it's changing a trach, whether it's just changing diaper, whatever it is. And so I'm here to say, listen, I did this and, and I can tell you how gratifying and how important it is. You know, I'm in a room. I couldn't be in Luke's room for a few months, and now I'm in this room because I feel almost a sense of peace.

I spent almost every night with Luke, all night long taking care of Luke as Luke's primary caregiver. And I think that it's important for me not only to help families' [00:08:00] financially and and otherwise, but also to help fathers because most of the time it. , it's mom helping out. It's caregivers, it's nurses, and I'm here to talk to fathers to say, listen, you can make a, make a big difference in your child's life.

Raylene Lewis: Tell me, you have done so much for the T B I community. You started team Luke, hope for mines. Can you tell me a little bit about your organiz? We 

Tim Siegal: started in 2018. Team Luke, hope for Mines, which supports children after brain injury. And last year we granted over half a million dollars. This year we've granted close to $600,000.

We're in 43 states. We help families in various ways, financial support education. Advocacy programs, support groups, online support groups online for siblings. In January, I'll be starting a support group for fathers, and so we do a lot for families. We receive an application nearly every single day.

Raylene Lewis: Can you tell me a little bit about what [00:09:00] you offer to parents who have kids who have new needs? 

Tim Siegal: We've helped families. , maybe get a lift for their car, paying bills. We've actually helped purchase a car for a family. We have helped families where therapies are not covered by insurance. So Team Luco Mines is able to give up to $5,000 for the first year.

And so we, we know that maybe 5,000, that doesn't go a long way, but it is, it is at least a start. 

Raylene Lewis: And they just go online to fill that out. Right. It's an online. That's 

Tim Siegal: right. They can go to Team Luco from mines.org, fill out an application, and then we get back to them right away. 

Raylene Lewis: Okay, perfect. Now, you are a published author, is that right?

Tim Siegal: That's correct. I don't know if I'd call myself an author. I did write two books, but in 2019, I came out with a book called Us in God's Hands, and the reason I came up with that title is because when Luke, in day eight, Luke had three brain surgeries all in a few hours, I asked the doctor [00:10:00] what he thought.

He said, I'm, I'm out of options, but it's in God's hands. So that book came out in 2019, and then just a few weeks ago, I came out with a new book, my second book called Fight Like Luke, transforming Grief Into Love, strength, and Faith. That book is now on Amazon on our website, team luko for minds.org. You know, this is a book.

basically talks about grief both from when Luke, in six years of his working hard to try to become more involved that, that the therapies helped Luke a lot. But in the last year, Luke passed away last August 19 from Covid. It's been 15 and a half months, and I'm still just overwhelmed with grief and sadness.

I'm doing all that I can to keep Luke's legacy alive by helping families all over the country. And this book hopefully will help a lot of people. 

Raylene Lewis: I, I really am looking forward to reading it. When you talk about dealing with, [00:11:00] with grief and loss, what advice can you give to parents who actually, who know someone who is going through this, but maybe aren't going through it themselves?

Because I think there are a lot of people who want to help in our community. You know, there's just a, a slew of emotion because, . We see this happen a lot and we want to be there to support our, our, our family, our friends who are hurting this unimaginable pain. But a lot of times people don't know what to say.

They don't know what to do. 

Tim Siegal: Well, you know, whenever I hear that, that someone says, I don't know what to say, the easy thing for me is when I received a text. and it said, listen, I'm praying for you. I'm thinking about you. That goes a long way, and so I, I believe a text or an email that shows that your care, care, that you listen and that you want to be able to, to visit that even though people are going through such [00:12:00] overwhelming, almost unbelievable grief.

That person still wants to know that you are there, that you care, that you're not invisible, that you don't want to talk. And so I, I, you're speaking from my experience that. Certainly after, after a few weeks where I felt I needed to be around people, but I didn't want to be around people. You know, it, there's a difference where I know I needed it, but I wasn't ready for it.

But once people reached out to me, then I needed them and I appreciated it. And so it's very important that, that if you have doubt whether or not you should, the answer. Speak to someone, talk to someone they will appreciate it, and they'll let you know how much they wanna speak or when they're ready.

So my, my answer to that is simply don't hesitate. Talk to someone who's dealing with this. And they'll let you know how much they want. They [00:13:00] want your help. But a, a note, a letter a knock on the door a text, a phone call. It's very, I. 

Raylene Lewis: I really appreciate that advice. How does somebody go to find out information about your nonprofit 

Tim Siegal: team?

Look cofer mines.org and also you can go on to our Facebook pages. You know, team the culture minds and to join our community. We will update people when we have upcoming support groups. You 

Raylene Lewis: know, I just really thank you for coming and talking to us today. Is there anything else that you would like to share?

Any other information that's really important to you that you would like to get across to our listeners? 

Tim Siegal: I would say that, that it's important to know as caregivers, that, and as parents that number one, never give up hope. And number two, Don't think you can do this alone. You need to take care of yourself.

You need to get sleep, you need to eat well. I was always told that even though I struggled with sleep, but I, I do know that, that the brain heals and that [00:14:00] your child needs you, needs you so much. And, and I know that Luke made incredible improvement. What we were told Luke never. Is nothing. What happened?

Luke was almost able to speak. He opened his mouth. He responded with tongue movement. And so Luke's anoxic brain injury was as bad as you can get globally damaged and yet, He improved dramatically and I think he improved because of the love that we gave him. 

Raylene Lewis: Thank you so very much for your time today, Tim, and for sharing your story and for all that you're doing for people who have suffered A T B I.

My pleasure. In chapter three, Katherine talks about a joyful rebellion and the need to redefine celebration. She discusses how people tend to save things for. Instead of enjoying what they have now in her own life, she was given some beautiful bedsheets after her marriage, but puts them in a linen closet instead of on her bed, deciding that they were [00:15:00] just too nice to use.

Right away. She asks the question, why did I wait? Personally, I am totally guilty of this myself. Many times I have saved something I could have used and would've thoroughly enjoyed for some unknown time in the. In fact, I've ended up throwing things away that I could have used without ever even using them.

They just went bad. She points out the silliness of this behavior that if you save something for another time, you may actually never get to use it at all. She also says that if you look around you, there are many people you know that are also experiencing difficult times of one kind or another. She recommends getting a group.

because if you realize that you are not the only one in pain, it lifts some of the weight off your own shoulders. She says there is no greater way to turn a pity party into a praise party than perspective, [00:16:00] because when we all talk to each other and see what other people are going through and the challenges that they are facing, we realize that as hard as our stuff.

It could be even harder. Celebration, even when going through difficult times can be an act of hope and in a way, a joyful rebellion against fear. Today's quote is by Anthem St. Martine. There is something to appreciate an every moment of every day. Strive to find it as often as you can. Living with gratitude will change your.

I always like to end our time together with a motivational song recommendation. I don't play the songs because of copyright laws, but there have been many times on this journey where a song has really spoken out to me and help me with my day. Today I'm recommending you check out I by Kendrick Lamar, but make sure it's the radio edit version from his 2014 single.[00:17:00] 

One day at a time, the sun gonna shine. And as always, if you have questions, have a topic you would like to hear about, or a great song or motivational quote, don't be shy. Share it in the comments and let us know. And if you liked what you heard today, please go online and rate this podcast. Remember, you're never walking this journey alone.

Take care of y'all.