Unique Melvin’s Story

Thank you to Rachele at Unique Options for sharing this lovely video.  And, thank you to Melvin and Jeff for being “extremely passionate about shedding light on their unique perspectives with traumatic brain injury and would love to offer motivation to others who are struggling!”  Your positive perspective is truly motivating to all of us.

Unique Jeff’s Story

Thank you to Rachele at Unique Options for sharing this lovely video.  And, thank you to Melvin and Jeff for being “extremely passionate about shedding light on their unique perspectives with traumatic brain injury and would love to offer motivation to others who are struggling!”  Your positive perspective is truly motivating to all of us.

Joseph’s Story

Joseph Chernach committed suicide in 2012, at the age of 25. A year later, brain tests revealed that had chronic traumatic encephalopathy, or CTE. Though he played youth and high school football for eight years, he is one of few football players to develop the degenerative brain disease without competing at the college or pro levels. 

Through the eyes of his devastated parents, this is Joseph’s story:

Debra Pyka: I first noticed that something was wrong in 2009. Joseph was off at college, living with his brother Seth. And when he came home, things were strange. He’d be happy sometimes, and very different other times. If you asked him about school, he’d get bothered. And then I found out from Seth that he wasn’t going to classes or doing his homework. And eventually his dad called me and said he wasn’t in school anymore.

When he left school for good, I started noticing he was very withdrawn — from his friends, from everyone. That Christmas of 2009 was actually the last one he came to. And it just got worse and worse.

He was bouncing back and forth. Sometimes he’d live with his brother; then he’d come down here to Wisconsin and live with me; then he’d get into a depressive mood and go back up to Michigan and stay with his dad, or with a friend. He had a job here in Wisconsin as a school custodian, but he could hardly get up to go to it, and eventually he lost it.

Jeffrey Chernach: He really changed completely. He went from being an honor student, a team captain, a class clown, to a total hermit. He became angry, and paranoid, and totally unmotivated.

He just couldn’t function, and never wanted to leave his room. By the end, he was a complete night owl. The only time he’d come out would be during the night, when he wouldn’t have to face anyone.

Debra Pyka: He thought people were talking about him, and said other things that just didn’t make sense.

I knew he was suffering. His depression was so severe that I couldn’t make him understand to go get help. I went to counselors, and I told them, “I’m scared my son is going to die, and I don’t know what to do.” I tried and tried, I even made appointments for him, and he wouldn’t go. I just couldn’t get through.

I’m not sure whether he had any idea that head injuries had anything to do with what was happening to him. But he did once tell me that he thought counseling and medication weren’t going to help him. Maybe that meant he had an inkling that there was a deeper problem.

I remember standing in his room one day, a few months before he died, and told him, “You’re not going to die before me.” I actually told him that.

Who Joseph was

Jeffrey Chernach: He was just a very vibrant, very outgoing kid. People liked him. He always wanted to be around other people, and was always cracking jokes, trying to get people to laugh. I guess you could say he was a bit of a class clown.

JosephTyler.0

Joseph and his brother Tyler

Debra Pyka: When he was little, he was always just running around with his brothers — playing, being rambunctious.

As he grew up, he also got to be a very motivated kid, with a strong work ethic. He has always done really well in school, and after graduating from high school, he started at Central Michigan University, and wanted to be a physical therapist.

For fun, he liked to go hunting and fishing with me on our family farm, and he loved the Green Bay Packers and the Michigan Wolverines. And he liked to hang out with his friends. He had a lot of them, and that showed at his funeral. The church was full. You could tell how well-liked he was.

Joseph’s football career

Debra Pyka: He was always athletic. He started wrestling at a very young age, in first grade. He eventually had so many medals that they wouldn’t fit on his letterman’s jacket. He had so many trophies. He was very good at every sport he played — wrestling, pole vault, football.

He started football with Pop Warner, in fifth grade, and stayed in it until eighth grade. Then he played for Forest Park High School.

Jeffrey Chernach: He always played football on the same teams as my other two sons, and during Pop Warner, I was always on the coaching staff — either as head coach or an assistant. Then, when they were in high school, I was a volunteer coach.

Joseph would have told you that football was his passion. He wasn’t big enough to play at the next level, in college, but the heart was there. He loved it. He and both his brothers were very accomplished — they received all-state honors at various levels. There’s a very well-established football tradition here. Forest Park High School is something of a powerhouse, and he was a big part of it.

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Jeffrey with his three son.  Joseph is #32

All my sons played running back, and they were all equally good in different ways. But Joseph, he was probably the most exciting one to watch. His running style was like a slasher. He’d hit the hole so fast, and he’d pop through it.

Joseph also played on defense, at linebacker and sometimes defensive back. As a player, his strength was that he wouldn’t make too many mistakes. He was always in the right position at the right time, and he’d hit you hard. He was a great tackler.

We never knew of him having a concussion. None of us. We didn’t know of any times where he was knocked out, or even just took a big shot. That’s the thing. There were no precursors that we were aware of.

Debra Pyka: Because it was a small school, Joseph played offense and defense. That meant he was taking twice as many hits, and he returned kicks and punts sometimes too. And the team would always end up in the state playoffs, so they’d play even more games, and have even more practices.

I think all this was a mistake, and contributed to it. But we didn’t know that at the time.

JosephFootball.0 Joseph playing for Forest Park High School

Joseph’s death

Debra Pyka: Once he was depressed, he would often go for walks when he got frustrated, or upset, and just call me or Seth as he walked. And on that night, June 6th, he walked out of the door at about 7:45 pm. It was summer, and still light out. I figured I’d let him clear his head, and then about an hour later, I tried calling him, and he didn’t answer.

Before midnight, I tried calling his phone about three or four times. By six in the morning, he still wasn’t home, and I was panicking. So I called my nephew, who lives three miles down the road, because I thought he might be over there. But he hadn’t seen Joseph.

My heart sunk. I looked all over the house, in each of the cars, and I called his grandma, who lives about 11 miles away, and she hadn’t seen him either.  I started calling all my relatives, I called Joseph’s boss, and no one had seen him. I knew something was wrong.

My daughter Nicole and I got in the car to go to look around my nephew’s house, and as we drove down the long driveway — we live in the country — I was looking up at the trees. I thought I was going to see him hanging from them. This is what I was thinking.

We didn’t find him, and we came back home, and my daughter-in-law told me to file a missing person’s report. And then my husband Fred came home, and he went out to the shed to get something. He said that just before he was going to walk out the door of the shed, he saw something hanging inside. It was Joseph.

My husband ran inside, saying that we needed to call 911, and trying to stop me from going out there. But I ran out to the shed. I guess I imagined him alive in there, bleeding or hurt. And there he was, hanging.

I was so shocked that I couldn’t even scream. I just held on to him until the first responders got there. They had to pull me off.

Joseph’s diagnosis

Debra Pyka: I never had any idea that football had anything to do with it until after he died. I remember listening to the news, and hearing about professional athletes dying from suicide, but I didn’t make the connection.

After he died, his brother Tyler told me that I needed to send his brain in, to get tested. And then when I read about the symptoms of CTE, I saw that he had every single one of them — the anger, the depression. I just had a feeling that the test would come back positive. Otherwise, it made no sense: he had been a happy kid, with a lot of friends. How else could this happen?

Jeffrey Chernach: Right up to the point of his diagnosis, a year after his death, I didn’t suspect it at all. When it came to football, I just wasn’t aware of the potential for long-term brain problems.

When I heard the diagnosis, I don’t want to say it was a relief, but…it was an explanation. It finally made some sense.

Debra Pyka: In September 2013, after we’d sent his brain to the Sports Legacy Institute, the doctors called me to tell me the diagnosis. The report said that his degeneration was the most severe they’d ever seen in a person his age, 25.

I suspected he had it, but I didn’t realize it was going to be that severe. I was shocked by that. I was crying. But, after I thought about it more, I was also angry.

The solution

Debra Pyka: There aren’t many kids who’ve only played high school football and developed CTE, but I think there are more than we’ve realized. I’ve even had contact with a few other mothers, and they’ve told me that their sons died from suicide after playing football, just like Joseph.

I think it’s going to come to a head. I think more kids who played football will die — whether from suicide or otherwise — and parents will have their brains tested, and they’ll see.

Jeffrey Chernach: My views of football haven’t changed that much. I’m still a volunteer coach at the high school level. I don’t think football needs to disappear.

But if I had to do it over again, I’d keep my kids out of organized sports until fourth or fifth grade. And then if they played football, I’d limit it to flag football. It doesn’t need to be tackle. Kids can learn the sport, and the fundamentals, and then maybe in high school they start to tackle.

I also think there must be some other factor — whether it’s a gene or chemical imbalance — that predisposes someone to CTE, and I think we need to find that out. That’s what will save lives.

I do think that within the next five years or so, you’ll see high school athletics doing more to keep a kid out of sports if he suffers a concussion — maybe for six months, or a year, no matter how he suffered it. Because they’re the ones that are going to get sued. And I don’t see youth tackle football being around too much longer. I think that at some point in the future, it’ll be gone.

Debra Pyka: I think that kids should not be playing tackle football at all. That’s my opinion, and the opinion of plenty of doctors.

Their brains are rattling inside their skulls, and this “heads-up football” program, I’m sure it helps, but every time they get hit, it still jars their brain. This is what’s causing CTE. It’s not just concussions — it’s the constant rattling of their brains inside their skulls. I think there are a lot of kids out there who have brain damage and don’t even know.

The only solution I can come up with is switching to flag football. I don’t want to see the sport of football totally eliminated — I know my kids loved it. But I don’t see how you can make football safe. You can make changes to wrestling, and to hockey. They can make those sports safer. But football is just a dangerous game because of all the contact, and because these kids’ brains are not fully developed.

I was raised watching Green Bay Packers games every weekend. Sometimes I still watch, but I look at it in a different way. When I see a big hit, I wonder — is he going to have brain damage? Is he going to kill himself someday?

This didn’t need to happen. I don’t know what it’s going to take, but it needs to stop.

It’s literally the worst feeling in the world to lose your kid. I blame myself — because I didn’t get him help, and because I didn’t walk out the door to follow him as he was leaving. Everyone tells me that I can’t blame myself, but if you’re a parent, and this happens to you, you will blame yourself until the day you die.

Ever since I found out Joseph had CTE, I’ve been calling my congressman and senators, and sending letters, and I haven’t gotten any real response. This is a health crisis, and people don’t realize it.

So I realized I had to talk. I don’t want to see other families go through what we’ve gone through. For us, this isn’t something that will ever go away. We are going to have to live the rest of our lives without Joseph.

 

 Joseph’s parents, Debra Pyka and Jeffrey Chernach, told their story to Joseph Stromberg and shared it with braininjurystories.org.  Their ultimate goal is to educate parents and coaches concerning the hazards of sports on the developing brain of children.  With knowledge, we can make all children’s sports safe and fun by preventing traumatic brain injuries from occurring in the future.  We thank parents like Debra and Jeffrey, and all the folks who work tirelessly to help promote prevention and change.  

Krysta’s Story

I had never heard of a brain injury until it happened and I had one. It’s one of the split second things I guess.  On August 31st, 2013, my life changed forever.

An old friend and I were in the car one evening and she didn’t stop at a stop sign. It’s all black from there for me, but that’s when it all happened. We were t-boned on my side of the car and right after the accident she tried to drag me out of the car. People had to stop her. 13 hours later I finally made it to the third and final hospital I spend my first month at. I had a broken pelvis, collapsed lung, traumatic brain injury, and burst bladder. I was in a coma my first week with non-convulsive seizures due to the head injury. Another month later I went to a rehab hospital and I worked on getting better.

It’s been a really long road, a road I’m still on. Doctors tell me 1-3 years to recover and then I may not be healed from my brain injury and it’s scary. I lost all of my old friends after my wreck because I was this “new person”, but I’m figuring out how to cope and learn to live with the new me every day.

I use coping skills I learned from going to a psychologist and psychiatrist. When I get really anxious I just breathe in and out and count the breaths to distract myself. Another coping method I use when I am stressed is to picture a place that’s peaceful and makes you happy, like when I’m stressed I’ll picture the beach. Also, power naps can help, they’re about 15-20 minutes but when you wake up you’ll feel refreshed and it’ll help stress. And, I will say that at first I was scared about talking to someone about my problems, but it can only help you and I definitely suggest doing it. A therapist is a great person to vent your feelings to if need be. It is stress relief and they can give good advice.

Here’s a before and after from my wreck, though the brain injury isn’t totally healed yet. I have to say to anyone out there going through stuff like this – don’t give up!

written by Krist for braininjurystories.org

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Bill’s Story: My thoughts on the sixth anniversary of my son’s accident

Bill/Dad here.

bill powers
I  write these comments on this sixth anniversary of Joe’s accident. I  recite some of the lessons I have learned over these past six years. Maybe it will help others who have loved ones suffer a TBI or other traumatic injury. Some of my comments apply more to people personally visiting their injured loved one; hopefully, they will be of assistance to everyone.
We never know when we will be more involved with an injured person than we could ever have imagined. TBIs and other serious injuries occur across the general population.
Below I write lessons I have learned, mostly the ” hard way” . I am known as a “Control Freak” and this TBI journey has taught me there are situations we experience in life where we have little or no control. I am a more patient man now.
You may not agree with all I write, but my comments are heartfelt, based on experience and I suggest you might
agree more than you can imagine if you had seen what I have seen. Thanks for reading.

Here goes :

1. Maintain Hope.  Most of us are “Spiritual”…use that strength.

2. Smile.  Costs nothing. Difficult. Helps enormously. Humor carries the day.

3. Protect your health. Exercise. Eat well. Take breaks. Do not smoke. Insist those that you love wear helmets when on skis, skateboarding or a bike. No motorcycles. If you are a friend of a family member or another  who is constantly visiting the injured patient, encourage them to take some breaks.  Maybe send them home and you go.

4. Do not ask : ” Why did this happen ?”   Irrelevant.  No good answer.

5.  The Goal of treatment is to make the injured person as Independent as possible. I used to open doors for injured people, try to do things for them. It was a surprise to me to be often told “no.”   when I asked if the patient wanted help. It may take several minutes to open the door, but they are determined to do so.  Need to develop confidence along their Journey to Independence..
Just this week I was moving an obstruction in Joe’s room so he could get into the bathroom to brush his teeth.  Joe told me, “No. I need to do this. You will not always be here.”

6. Educate yourself about the injury.  This is much more difficult than it appears. I remember being reluctant to learn things I did not want to know. I joined a discussion group with friends and family of TBI patients.  One family member was disruptive and the moderator not able to control the situation.  I quit.  I had stress enough. With the internet, we can learn a lot. There are legitimate “groups” and blogs that help. You will always be talking to your loved ones, care givers, and friends. You cannot help but learn on a daily basis. Your loved one’s social worker can direct you to resources. The people that work mostly with your injured people can give you the most information. The CNAs and nurses and therapists see your injured patient 100 times as often as the doctor.

7. Advocate for your loved one. Be polite but if you sense something is not right, seek a remedy.  You will be told many times negative comments. Do not accept these comments.  There is often another approach. Even highly educated people can make mistakes.

8. Thank the health care providers.  They “do the work of angels.” They are kind, educated, compassionate and underpaid. Thinking about it, virtually everyone they deal with is traumatized : the injured person, family, friends. Co-workers. When I see a nurse at the grocery store, I stop the nurse and say : ” Thank you. We love nurses”. Rarely, you may observe an example of poor care. No profession is perfect. Speak up about it.  I remember Joe’s brother Jim observed a nurse giving Joe a plate of food as Joe and Jim were waiting in an ER area of a NY hospital for some 20 hours.  The nurse acted out of compassion, but at that time, Joe could not chew or swallow. I remember a nurse picking up the tube from the floor that was being inserted into the PEG… that provided liquid to feed Joe. I stopped her. Be alert.

9. Balance patience with advocacy.   Patience with the injured person, with your family, with caregivers. This is not easy.   As I said above, I learned very quickly that I have had very little “control”during this TBI Journey. I remember telling Joe once as he waited a very long time for assistance:

“Joe. you are sure quietly patient.”

Joe : ” Or quietly impatient.”

Joe told me : ” I am upset, but that is no reason to impose this on others.”

10. Chances are, a severe medical emergency will happen to you or a loved one. You need health insurance.  We all need to push for modernization of the health care system. More and better computerization. We need additional health care professionals.  They need to be paid more. They cannot finish school with a mountain of debt. Many of the people resisting a national health insurance plan have health insurance. Joe had health insurance with a huge insurance company…Aetna, that several times played games and refused and delayed agreeing to pay for meds and care.  It is terrifying to have your loved one be denied care. I talked to an Administrator of a Facility where Joe resided. Due to cutting of funding by the Tea Party, the facility could not repair its air conditioning. Paul Ryan needs to stop claiming his healthcare cuts are “based on his catholic faith”.   Pope Francis, the nuns on the bus and I disagree. I can speak from 75 years of being a catholic.  Paul Ryan needs to read and live the bible and not Ayn Ryan.

11. Modern technology is a huge help to patients. Joe is able to use his lap top and his cell phone. He loves contact with the world outside of his facility.   Television is also good.

12. Visit with and communicate with your disabled loved ones.  Call them to say hello.
Write them. I know you will be a breath of fresh air.
_____________________

Joe Powers Image 4

 
 
 
 
 
 
 
 
 Joe performing at the Experts of Comedy Show, 2008
 
 
Over these past six years Joe ( and his family) have received incredible support from family and friends. Joe continues to be an inspiration, as do Joe’s family and friends. I could not have done what I have without my wife and kids. And Joe’s friends. I do remember the brave young woman who called us to tell us that Joe had an accident. I remember much, including the kindness of the young lady that substituted for Joan and I when we went home to Oregon for awhile. She actually came to our hotel and stayed there for weeks at a time.  I remember the crowd of stand-up comedians that visited at Bellevue. The staff at Bellevue had never seen anything like it. I remember the fund raiser by Joe’s stand-up comedy friends.   If you want to see Joe’s stand up comedy, you can go to :
 
The people working in the TBI Waiver Program of the State of New York are amazing. Along this “Six Year TBI Journey’ all of Joe’s caregivers ( in the broadest sense of the term ) have been hard working, dedicated, loyal and compassionate. I have decided not to name them for fear of omitting some. Please know you are loved by Joe’s family more than we can ever convey. Likewise all of you that pray for us, and read Joe’s updates and write and visit.
 
Joe pouring water on me for the “ALS Ice Bucket Challenge”
 
 
 
 
During this TBI Journey, Joe acquainted me with singer Tom Petty. Below is one of his songs that
reminds me of Joe and so many others :       
 
                I Won’t Back Down
 
Well I won’t back down, no I won’t back down
You can stand me up at the gates of hell
But I won’t back down.
 
No, I’ll stand my ground, won’t be turned around,
and I’ll keep this world from draggin’ me down
Gonna stand my ground and I won’t back down
 
Hey baby, there ain’t no easy way out
 
Hey I will stand my ground
and I won’t back down
 
Well, I know what’s right, I got just one life
In a world that keeps pushin’ me around
But I’ll stand my ground and I won’t back down.
  
 

Maureen’s Story

 

Caregivers, Witnesses, Cheerleaders, Coaches: Standing beside our loved ones with TBI

 

I am the Significant Other (S.O.), and mother, to my daughter Talbot who was hit by a car while crossing the street in front of her university over three years ago. She suffers from severe Traumatic Brain Injury as a result. She initially spent over 6 months in the hospital recovering from her injuries which were almost exclusively to her brain. She was attending a university in Northern California and roughly 6 hours after I learned of the accident, I left our home in CT and boarded a flight from New York’s JFK Airport for San Jose. She had already had one surgery to remove the sub-dural hematoma on the left side of her brain which included a craniectomy to relieve the swelling just hours after arriving at the hospital. A little over 24 hours after I arrived, they operated on the right side of the brain for similar bleeding issues, and another craniectomy was performed. Injuries to both sides of the brain, occur in very small percentages in the overall spectrum of head trauma. They are among the most severe types of brain injury.

 

What I didn’t know then about brain injury and being a primary care giver, I know a whole lot more about now. For me, there was a stance I took from the get go that I was going to fight for her. I think that came not so much from me, but from her. It wasn’t that she could communicate that to me, in fact it has taken over 3 years in her recovery for her to convey any emotions at all. Rather it was a fight I took on for her, because of her, instead of her, without her. When the neurosurgeon approached me a few hours after I arrived, trying to explain how grave her condition was, I knew he was trying to warn me, to tell me it was bad, really bad. I said the first thing that came into my head, you don’t know Talbot.

 

That early stance has been my pillar during this 3+ year rehab journey and I daresay essential to me as her S.O. – significant other, primary caregiver, mother, and coach. Early on someone said to me they didn’t want to give me false hope. I immediately corrected them. There is no false hope, I countered, only HOPE.

 

If HOPE could be a power energy drink, I would be the spokesperson and chief salesperson for the product launch. Without it, I would be lost, bereft and rudderless. As I walk alongside my daughter’s journey which included re-learning to breathe on her own, swallow, cough, chew, sit, stand, walk and, as of late, ski, ride horses and complete the NYC Marathon this past year, I am the historical scribe but also not so silent, cheerleader and slinger of hope messages. Even when she was undergoing multiple surgeries, I would sing ‘fight songs’in her ear as they wheeled her into the OR.

 

What I was in no way prepared for, (and boy that list is long), is the extent of the commitment. I don’t mean like, overtime required, or wish I could take a break, but I mean that none of that is an option. I am not begrudging the commitment, not at all. That’s not it.  I wasn’t mentally prepared for it. I kept saying this is my first rodeo and I would learn as I go. And that couldn’t be more true. I am learning along the way to be her coach, her S.O., and a mother again to my now adult daughter, now 24, over 3 and a half years after her tragic accident. What I know now, and have to swallow whole, is that I have to learn what she is learning in her rehab —about the extent of her injuries, the deficits she has suffered, the strategies she needs to use to overcome them and the acceptance that will hopefully come (soon) after she mourns her previous life and reframes a new one. She has been at NYU/Rusk Brain Injury Day Treatment program in NYC since last March, and they have warmly and brilliantly teased out miraculous results making some of the aforementioned successes possible. Her journey has been jagged, long and strident. Where she is now is thousands of miles away from January 21, 2011. I stand alongside her in awe and wonder as she continues to blaze this trail to recovery.

 

 

 

 

Chicken Soup for the Soul: Recovering from Traumatic Brain Injury

The Chicken Soup for the Soul: Recovering from Traumatic Brain Injury book released today.  It contains 101 survivor stories of brain injury recovery, including Yes, I’m a Train Wreck, originally published as Jon’s Story here on this blog.  You can purchase it through www.amazon.com and, if  you sign up for their SMILE program, you can request that Amazon donate a portion of the proceeds to BIANYS.  What a win win that is!

Jon Blair asked me to submit his story to the Chicken Soup books and he wasn’t the least bit surprised when his story was selected.  His determined, positive attitude makes all things happen for him.  He just doesn’t take “no” for an answer.  Congratulations, Jon!  And thank you for the nod to BIANYS under the author’s section.

You can read Jon’s Story on this blog.  It is the very first story on the blog roll.

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