History of CTE Awareness Day

CTE Awareness Day January 30, 2018 is right around the corner, and will be here before we know it! CTE or Chronic Traumatic Encephalopathy is a progressive degenerative disease of the brain found in people with a history of repetitive brain trauma (often athletes), including symptomatic brain injuries as well as asymptomatic subconcussive hits to the head that do not cause symptoms. In other words, every hit counts.

CTE Awareness Day was started by the families of “Faces of CTE” in 2016 at Super Bowl week in Houston, in the NFL’s back yard so to speak. 

The day was founded to shine a light on the devastating disease, but especially to increase awareness at the youth level where millions of kids are exposed each year playing football and other sports with repetitive brain trauma as an inherent risk.

While the media, and other organizations you would expect to pay much more attention to such a significant launch regarding a topic that has garnered major attention and thousands of stories from The NY Times to People magazine, they didn’t. They looked the other way. The bold and the brave among us, took a stand for athletes, especially the children who played for fun and were not paid to play. It hasn’t been a popular stance.

In spite of the lack of some CTE leaders in research and advocacy’s support, CTE Awareness Day was a huge success. More than a dozen major new sources from NPR to the Houston Chronicle ended up covering the inaugural day. Families from across the country gathered representing athletes lost too soon from the NFL, college and Pop Warner. We shared our pain as well as joining together to make a difference.

Since that day last January, our group has written a book, “Faces of CTE” that will be available for purchase in March 2018 that chronicles the 14 lives of athletes who succumbed to the mind robbing disease known as CTE. We also gathered in DC in March on Capitol Hill for Brain Injury Day to let our collective voices be heard by law makers. And monthly we provided free “Tackling Grief” workshops with Grief Expert & CTE Mom, Marcia Jenkins.

Throughout the year we did the unthinkable, led by CTE mom, Debbie Pyka, we asked families of youth football players who died suddenly to donate their loved ones brains through our collaboration with Mayo Clinic in Jacksonville, Florida.

All in all, we moved mountains to create a lasting legacy for all levels of athletes impacted by CTE and brain damage.

As the year comes to a closing we are busy putting together the next CTE Awareness Day, so stay tuned for more information on participating in next year’s social media and national advertising campaign to raise awareness. If you want to get involved to donate or help, call 800-596-7860 or email kimberly@nationalcheersafety.com.

Tackling the Holidays Past, Present and Future

Well here it is again, the holiday season. Deck the Halls and lets be JOLLY.

How do we go about being jolly when we can hardly hold our heads up?

There isn’t a magic formula, surprise play, one size fits all for those of us who are grieving the loss of someone we love. The holidays serve as a modifier to the memories and sense of loss we feel every day. But there are some helpful tips.

1. Everyone grieves differently… Some of us become outwardly more emotional, others quiet and withdrawn. There is no right or wrong way, just your way.

2. Acknowledge that the holidays are coming. Often times as the holidays get closer we feel anxious and we can’t seem to understand why we are feeling so unsettled. This can change from year to year. The days leading up to the actual day can be more overwhelming than when the day arrives.

3. Traditions… This is a biggie for me. Do we keep the traditions the same, or do we change them to give them a new look, but saving the most cherished? Or do we do away with some or all of them, in search of finding new traditions?

4. Acknowledging our loved ones that have died in a way that continues their legacy like preparing a favorite dish, placing their stocking in same place or perhaps a differently location. Speaking of those stocking, something that you can do to continue their place in our hearts and families, is have members write a special memory or a specific feeling they are having this season, place it in the stocking. They can be read and shared or put into a special memory box that can become a keepsake and shared season after season. There is also the “empty chair “ …… what do we do with the chair or that special space where “they “ always sat. Talk about and acknowledge that feeling of emptiness. Honor that sacred space sharing the importance of the person who now will fill that cherished place. Or leave the chair empty. Place a picture of the person on the table to serve as visual memory. Again, communication is key, discuss these ideas with the entire family so no one person is caught off guide or feels left out.

5. Have realistic expectations. We all aspire to create the perfect holiday. Even before the loss of our loved ones we expect too much of ourselves. No one person can do it all. There is no shame in reaching out for support in preparing for the holidays. There is no weakness in accepting others kindness. If emotionally it is just too hard, contact a professional for guidance and support. Truly isn’t that the meaning of the season of giving?

6. Take care of yourself. Get as much sleep as you can, but not spending all your time there, find a healthy balance, keep your diet in balance as well. Eating healthy will help your body as well as your mind. Accept an invitation to share a meal with someone. The best part of any meal is having someone to share it with. Try to get some exercise. If the mall is too overwhelming try a quiet winter walk. A perfect time for reflection and some tears, which brings me to tears, there will be tears. They are our friends, not a sign of weakness.

7. Be choosy … surround yourself with people who understand you. Don’t feel you must graciously accept everyone’s option where you should be in your grief journey. Stand up for yourself. My response to… you need to move on, get over it, put it behind you, he is much better off… was “do you want to trade me places” usually that ended the discussion. Our grief is not theirs to manage.

8. If the holidays do become overwhelming to the place where you can no longer do your daily work, care for yourself and/or your family. You may be having a condition called “complicated grief”. If you are having any of the challenges mention above, contact your doctor or a professional counselor.

9. In the season of being grateful, the purity of light and hope, we need to give ourselves permission to live again, to laugh and seek joy. We must remember when we allow ourselves those precious emotions it doesn’t mean we love or miss them less. There is no balance between the amount of pain we feel and how much we miss them.

10. If you just can’t do it, it’s okay. It doesn’t have to stay the same, it can change from year to year. A person I once knew always said “there is always next year” in this case he was right.
Remember, that love doesn’t end when someone we love dies… They are always with us. Maybe in the lyrics of a song, in the form of touch stone (mine is a cardinal), a cool breeze, or a Christmas stocking. Their memory and legacy grows.
In the spirit of the season…..PeacePictured: Mike Jenkins (March 3, 1966 – May 5, 2011) & Marcia Jenkins, Faces of CTE, Brain Donation Family Relations Director

The Rick Klassen CTE Story

My dad’s life ended far too early.

He died of lymphoma at the age of 57 following a three-year battle with cancer. However, as a former professional football player, it’s not the only battle he faced in his life.

As it turns out, my dad also suffered from the effects of chronic traumatic encephalopathy, or CTE. It doesn’t come as a surprise to our family, and it certainly wouldn’t have come to a surprise for him. He knew he had CTE before he passed away in December 2016; he just didn’t know the extent to which he had it.

The CTE was officially discovered by doctors who analyzed his brain months after it was flown to the Canadian Concussion Centre in Toronto, Canada where the brains of dozens of former athletes, both hockey and football players, have been autopsied. For his part, my dad wanted to donate his brain to know more about the effects of the thousands of sub-concussive hits and concussions suffered by his brain that was bashed around during a 10-year career as a defensive lineman in the Canadian Football League.

That doesn’t even include his four-year collegiate football career as an offensive lineman and several years of playing football and hockey as a youngster growing up in Chilliwack, B.C.

Diagnosed with Stage 2 CTE and what they call “argyrophilic grain disease,” a type of dementia, my dad’s brain was the equivalent of someone in their 70s or 80s. That is mind-boggling when you think about.

If you were having a conversation with him, you wouldn’t have ever known. He was a very intelligent man with a business degree and someone who seemingly had the answer to everything you asked him, from the economy to world politics to how things work. My dad knew what was going on.

However, on his bad days, you would get a clearer picture of what was going on in his brain, although some of his erratic behaviour wasn’t exclusively due to CTE. There was depression, irritability, mood swings, and if you ruffled his feathers, watch out. My dad was like the hulk. It was scary to watch and experience first-hand.

I am the youngest of the three, with an older brother and older sister who got the brunt of my dad’s tirades, along with my mom. My dad was emotionally abusive, especially to my brother, knocking him down a peg at seemingly every turn. I got some of that, too, the feeling of not being good enough. In our household, perfection was expected, and if it didn’t happen, there were consequences in form of yelling and screaming and words I cannot repeat.

My parents separated when I was 10 years old. My mom could not go on any longer dealing with the anger, disrespect and his downright inability to hold down a 9-5 job. My dad didn’t always like working with other people, and his irritability got the best of him, or perhaps the worst of him, at times. It cost him his marriage and relationships with two of his children.

However, there was another side of my dad that I had a privilege to experience. A loving side, a caring side. Every other weekend, I looked forward to visiting him and watching football, the game he loved so much. But it was more than just sports. Just being in his presence and feeling that love from him filled me up every time, and kept me coming back for more.

His parents and sister remember times before he played football at a high level, and they remember a kind, loving, protective son and older brother. Also someone who was incredibly intense and driven to succeed at whatever he did, but especially sports. He was an accomplished hockey, basketball and soccer player among other sports before settling on football.

During times like these, reflecting back on what could have been had my dad not played football or any contact sport, I don’t know what the answer is. It may have been better, it may not have been. Then again, I cannot image my dad without sports in his life. I cannot image having a dad that wasn’t a local sports celebrity and Grey Cup champion.

It spawned a passion for sports within me and that has served me well, playing sports like hockey and learning the valuable lessons about teamwork. But it has also landed me a career as a journalist. After years of having the dream of being a sportscaster, probably from the time I was 3 years old, I have had the pleasure of living it out. I am now 30 years old and have been a sports reporter at a television station in Kamloops, B.C. for six years. I partly owe some of that to my dad and who he was as an athlete and avid sports fan. I looked up to him and wanted to experience some of the attention and glory he received from teammates and fans.

So did CTE derail my dad’s life? Maybe. Would I want things to be different and have grown up with a happy, functioning nuclear family that was together? Sure. Would I want a different dad? Absolutely not. I loved him with all my heart, CTE or not.

If you have any questions or comments, please feel free to contact me at chadklassen87@gmail.com

Let’s Not Throw Our Kids to the Lions

During Roman times men were placed in arenas to do battle. Sometimes the battles were so fierce that only one man would come out alive. Thank goodness in the fifth century, this type of activity was deemed to be cruel and barbaric and was finally outlawed.

But maybe that barbaric activity changed into “new” and more socially acceptable practices like say; boxing, football, hockey, cage fighting, and maybe even warfare depending on how you look at it. (Where strength over weakness is celebrated as victory) Perhaps mankind’s’ fascination with humans pummeling each other actually continues unabated to this day. In Roman times most of the combatants were not necessarily in the arena by choice……. but they were always adults!

Children were not thrown into arenas as tiny gladiators.

So how have we evolved in modern times to the point where we are now willing to put our own children in such battles? How is it that we can put them in the equivalent of cheap Halloween costumes and ask them to emulate their NFL heroes? We did it. And we can honestly tell you we didn’t know at the time that we were slowly killing our son. We just didn’t have the information necessary 25 years ago to make the proper decision for the welfare of our child. Our biggest fears were orthopedic. Bones (for the most part) can break and heal. Now we have learned BRAINS CANNOT heal like bones can. And this we have learned the hard way. (The hardest way imaginable) We lost our son at the age of 32. And sadly he was lost before he ever had a chance to live his life.

Our son Patrick never played in the NFL. Patrick was like millions of children before and after him that just played for fun and success in life. But throughout high school, prep school and Dartmouth College, our sweet, tough, young running back received enough sub-concussive blows to his head to essentially seal his fate. When he died, a newscaster friend of the family suggested he might have CTE, Chronic Traumatic Encephalopathy. We had never heard of CTE before. We had heard about NFL players having brain issues but never dreamed it could have an effect at the level of a college player. When Patrick’s autopsy revealed he had widespread CTE we were shocked and horrified. How many other players like Patrick are there out there? How many other families are dealing with a loved one gradually coming unwired and have no clue what is happening? Not every grieving family has a newscaster friend saying the words CTE. For the sake of American families this has to change.

People need to know that this disease is out there. That it can occur in youth and high school and college levels of collision sports. Families need to know what the symptoms are and how to address the disease. This has been hidden in plain sight for much too long. It was this realization that prompted our family and friends to form the Patrick Risha CTE Awareness Foundation and the website,StopCTE.org. Families are burying loved ones all over this country thinking they died from suicide, drug addictions, PTSD, depression, ADHD, and irrational behaviors. Thinking that somehow something happened to change the person they loved, and feeling somehow that they failed them. Very few are linking these deaths to CTE.

Since CTE can take a decade to be symptomatic, most often no one is linking it to previous military or sports history from so many years ago.  CTE is an insidious disease that grows very slowly in the brain. We believe the magnitude of this horrific disease has yet to be discovered. Gunplay and murders are in the news every evening, and we always wonder how many of the perpetrators played one football game too many. Society muffles the fact that a reported 20 veterans a day commit suicide, and that suicides exceed homicides every year.

Science is showing that children are in danger and need our help and that families are in crisis. Parents are receiving conflicting data and just don’t know. Every person has the duty to save these children and families. CTE is 100% preventable. Let’s learn as a society to cheer our children in sports that are not harmful to their brains. Let’s get kids out of the arena.

Karen & Doug Zegel
Patrick Risha CTE Awareness Foundation