Posted: June 9, 2020
Episode 1: Hello!
Episode 2: Mindset
Episode 3: Noise & Light Sensitivity
Episode 4: Staying Social
Episode 5: Coping with Loss
Episode 6: Sleep Issues
Episode 7: Exercise
Episode 8: Vision
Esther Lovett’s Post-Concussion Syndrome Blog
The Mike Adamle Project: Rise Above
Click here to donate to The Mike Adamle Project: Rise Above and help support families living with suspected CTE.
Posted: March 1, 2018
Why we’re here: from Kim Adamle, executive director of The Mike Adamle Project: Rise Above
“If I have this, then I want to be the one to show others how to LIVE with it” were the first words from Mike when his neurologist told him his epilepsy and cognitive degeneration were probably due to Chronic Traumatic Encephalopathy (CTE). The doctor did not have much advice to share with us on how to cope with CTE – the most he could advise was 1,000mcg of B12 daily, a healthy balance of omega-3 and omega-6 fats, and to work as long as possible – to keep learning and stay active.
There is no cure yet for CTE, so our quest became: How do you live with CTE? How do you stay alive and experience a life of quality? Mike has always lived his life 110% all heart and all-out, so we approached this challenge with the same vigor. Through many heart-wrenching, tearful, gut-honest conversations, Mike distilled the essence of his goals for his life fighting CTE: to live with Dignity, Optimism, Energy and Excitement, Contribution and Purpose, and most of all – to give Hope to others.
Awareness of CTE is just emerging, and doctors and researchers are working to discover treatments. But for the many who are affected right now, we need to share our journeys, our experience, and offer support to one another. We do not have the time or luxury of waiting; we need to take action now for the sake of those afflicted with CTE and traumatic brain injury (TBI), and for their families and spouses, who are often the care partners.
CTE/TBI is pervasive, so we knew our life plan had to be comprehensive and multi-faceted. We targeted these primary life areas:
- Medical
- Nutrition
- Exercise
- Learning and Cognition
- Social and Community
- Spiritual
From these areas we started drawing big concept maps, asking what resources we already had – who were our “teams”? You know the saying, “it takes a village”? Dealing with CTE requires teams – many, many teams. Drawing up our teams in each of the above areas helped us organize and identify people, resources, and activities to support Mike’s functioning.
After establishing our support teams, we researched what to do. Did you know our brains continue to grow connections throughout our lives? Our goal was to do all we could to promote overall brain health as well as try to support neurogenesis (the scientific term for new brain cell growth) to offset the brain deterioration from CTE. We don’t know if we can stop or slow the brain degeneration yet, but we can do things to improve the functioning of the brain we have and strengthen the trillions of connections between our brain cells. Because we were determined to live our best life for as long as we could, we knew that various therapies once or twice a week would not be enough: Mike’s therapies had to be constant and consistent, so we incorporated everything we learned into our daily routines. Activities promoting brain health became our lifestyle, and every activity became an opportunity for growth.
This journey is improved by a strong support team. Those “care partner(s)”, whether they be a spouse, children, or other family or friends, necessitates a strong commitment and healthy working relationship.
The content you read from Mike and me as part of Rise Above is designed to give you the inside scoop on how we have approached our life since that moment Mike was diagnosed with probable CTE. We have heard from many families going through experiences all too similar to ours. We want to give you tools, resources, a supportive community, and hope. As you read and watch all that Project Rise has to offer, also incorporate the expert information and strategies from CLF’s CTE Resources pages so that your resources toolbox is as full as it could possibly be. We’re here for you, and we will get through this together.
If you have questions for me or Mike, email [email protected].
Click here to make a donation in support of The Mike Adamle Project: Rise Above.
A High Schooler Speaks Up Against Concussions
Posted: September 26, 2016
On October 19th, I will be one of ten Westchester County teens to be presented with the Milly Kibrick Youth Service Award for my work with concussions. I am so honored to be recognized for my advocacy work with concussions, but frankly, I never thought I would be an advocate for concussions in high school; I thought I would be a football player.
In my freshman year, I suffered a major concussion. I assumed I would bounce right back as I did from the one other concussion I had sustained. I figured I would rest for a day or two and then I would be fine. I thought I would be better in no time. I was wrong. It took me more than two full months before I could return to school and just over a year for my brain to fully heal.
When sophomore year came around, I was sick of concussions. My freshman year had been all about my concussion and I was aching to finally return to normal life and forget this injury ever happened. But I found myself thinking about my injury more than ever before: how frustrated I felt when every doctor I went to told me the same thing about staying in a dark room and just giving my brain “the time it needs to heal”; how each day I would wake up filled with false hope about this finally being the day my headache would go away; how no one at school really knew how to handle my long absence or my impaired cognitive abilities. I knew something needed to be done.
So I contacted the Concussion Legacy Foundation, hoping they would let me join their mission to help educate athletes and their families on concussions and Post Concussion Syndrome (PCS). Even though their Ambassador program wasn’t off the ground yet and they don’t often work with high school students, I was able to get my foot in the door and start a fundraising campaign for concussion research. After many hours spent over the course of several months calling friends and family, and through creative ideas like a March Madness bracket to raise money, when all was said and done I had raised over $10,000 for concussion research. I also had proudly earned the title of CLF High School Ambassador. In addition, co-founder and CEO Chris Nowinski agreed to come to my school and speak to and further educate the physical education staff, nurses, and varsity coaches on concussions.
Chris’s visit was amazing, but I wanted to do more. I felt I had just scratched the surface on what I could do to raise awareness about concussions and PCS. So Chris put me in contact with Dr. Mark Herceg, Commissioner of Mental Health in Westchester County. After hearing my story, Dr. Herceg offered me a chance to share it on a bigger stage. He invited me to be a part of the Westchester County Concussion Task Force and to come speak at a press conference unveiling the task force’s “Ten Best Practices for Concussion Management.” I spoke to the press about how my life was changed from concussions. I explained how the Ten Best Practices would have benefitted me. People need to be educated on concussions to provide support and understanding. The story was featured that night on several local news outlets.
After hearing me speak at the press conference, Eileen Reardon, executive director of the Brain Injury Association of New York, invited me to present at their first ever Advocacy Day in the state capital, Albany. There I once again shared my story, this time in front of a group of New York State Senators and Assemblymen. I now had the attention of people who could help promote education and awareness of concussions and PCS on a larger scale than I ever could have imagined. I am honored to been a part of the fight to promote legislation that would help Traumatic Brain Injury victims.
Looking back on all I have accomplished in the last three years, I am proud of who I have become and the work I have done. I never thought that reaching out to CLF would eventually lead me to an official Westchester County press event, let alone a podium in the lobby of the New York Legislature, but I’m glad it did. Though I never set out to be, as one reporter called, the “poster-boy for concussions in Westchester,” I would not trade the title for the world.
It is difficult to think of the day I got my concussion, mostly because I don’t remember much of it. I have been told that my teammate Ben brought me off the field when he sensed something was wrong with me. He said I was slumped over in my stance, wobbling back and forth, and looked asleep. I am thankful that I was lucky enough to have had someone looking out for me on the field that day. It’s scary to think about how much worse my injury could have had my teammate not been there. That is why I was so proud to be a part of Team Up Day and to bring it to my school. I feel very connected to this initiative and know it can help a lot of people. With over 44 million youth athletes in America, it is important for them all to know they have someone else looking out for them. Athletes have a responsibility as teammates to help each other in their times of need. Let’s all Team Up and Speak Up to fight concussions!
Finding Bravery: A Day-by-Day Journey Through PCS
Posted: December, 7 2015
On June 4th, 2010, I had a terrible waterskiing accident. A ski struck the area above my right eye and caused a severe concussion/TBI. At that point I had no clue how severely the injury was going to impact my life. My life pre-brain injury involved playing sports, succeeding at school, and travelling the world. I won athlete of the year in grades nine and 10, various MVP awards on sports teams, and in my last year of high school, I was granted the highest honor of “Top Graduating Athlete.” Beyond academics, I was on a Provincial Level soccer team. We won the Provincial Championship three times and the National Championship once, and also placed second at the U.S.A. Cup, which included teams from Europe and Japan. After two ankle surgeries, I could no longer compete in soccer and changed to Track & Field. I was then recruited to compete on the varsity Track and Field team at the local university. Sports were always an integral part of my identity and life.
Everything changed after my last concussion. I have had concussions before, but nothing as serious as the most recent one. I was always able to “shake it off” and resume my normal activities. Sometimes I would take a couple of days off of school and the headaches, blurred vision, irritability and fatigue would ease up. With medical clearance, I would return to the field. However, this time was different. It took longer to get cleared to resume activities. When I returned to school I could not concentrate at all. My usual zest for learning was not there, so I went back to the doctor. I was told school and sports were not options at that moment. One might think I would have been happy to not attend school, but I lapsed into a severe depression at the mere thought of it.
Currently I have headaches. They are horrible, stop you in your tracks, lay down and shut out the world headaches. I have little control over when they happen or when they will end. My balance is off, and I get dizzy and nauseated. I can’t go places because lights make me sick. My mood abruptly swings from calm to agitated, often for reasons that only make sense to me. New things stand out and impact my life that didn’t used to before my injury. I cry more than I did before. I worry and stress about everything.
I tire easily. It doesn’t make sense to other people that I have to lie down during the day. Crowds and noise are bothersome. I try to deal with the noise because I don’t want to annoy people and constantly ask them to be quieter. I can be forgetful, a problem compounded by the difficulty in explaining my condition to others. I struggle immensely with reading comprehension.
The hurdles I face post-injury have led me to develop strategies to be successful. One such strategy includes impeccable organization so I don’t forget to complete assignments for school, or to study for exams. Limiting time in front of screens – the computer, television, phone or tablet – is helpful too.
The symptoms from my injury have adversely affected my personal relationships and employability. I can only work for a couple of hours at a time because I get too tired and need more breaks than everyone else. It has been difficult to accept that I am not like a normal person my age who can go out with friends for dinner, to a bar, or shopping.
When I had my injury, post-concussion syndrome was only supposed to last between one and six months. But nine months afterwards, I was still dealing with all of the symptoms every day. I am grateful that NHL star Sydney Crosby spoke up about post-concussion syndrome, and that he was strong enough to sit out and heal. Once the doctors saw this, and that post-concussion syndrome is real, I felt my condition was taken much more seriously.
Going from a happy-go-lucky teenager to a young adult living with a TBI and its symptoms is something that I’ve had to accept. It has changed me as a person.
Two years after my injury, I had the privilege of speaking at a conference that put me on a path to share my story with hundreds of physicians, healthcare providers and other TBI survivors. Since then, I have attended other conferences, galas, and been published in the book “Concussed” by Keith Primeau and Kerry Goulet. I have met the most incredible people since 2010 that have supported me throughout this journey. Many thanks to the Parkwood Hospital Brain Injury Program, Fowler Kennedy, The Concussion Legacy Foundation, Dr. Robert Stern and Dr. Robert Cantu in Boston, and Stop Concussions.
‘Ringing your bell’ is not something to take lightly. Shaking it off and getting back in the game is not brave. Real bravery is recovering properly, dealing with the symptoms, and possibly enduring criticism from coaches, teammates, friends and the media. Health is a fragile thing; don’t take it for granted, because it can change in a matter of seconds.
Completing my undergraduate degree in 2014, attending Chiropractic College in Georgia with a high GPA, reducing my pain medication, and being able to do some physical activities again are just a few things that I never thought I’d achieve! The most important thing I have learned from this journey has been to never judge someone. A quote I live my everyday life by is “be kind to one another,” by Ellen DeGeneres. You do not know what someone is going through behind the face they put on every day, you do not know their struggles or their story. I am so proud of how far I have come since June 4th, 2010!
Thank you to everyone who has supported and continues to support me through this day-by-day journey; I wouldn’t be where I am today without you all.
Mac Parkman
Warning: this story contains mentions of suicide and may be triggering to some readers
Mac Parkman was a vibrant human being who embodied the best attributes humanity and God find endearing in this world. Warm, funny, witty, kind, compassionate, calm, loyal, and caring are just a few of the characteristics that can be used to describe this wonderful young man. He brought so much warmth and sunshine to everyone he touched, yet he was a tough competitor… a true peaceful warrior until he left this earth.
Mac was born on March 10, 2003 in Albuquerque, NM, to a loving, blended family. Mac spent his first six years growing up in the foothills to the west of Tijeras, NM. As the “new” kid in the family, he was welcomed warmly by his mom and sisters while his father was overseas participating in the invasion of Iraq. As a newly knit family that had never raised a son or brother, he brought so much love into their lives and brought them closer together with his presence, a gift that the family shares to this day.
Mac was a quiet boy, always wanting to do things and physically active from the start. Track, baseball, karate, and skiing with his dad were his early activities. He loved being active and with his friends, especially when they would eat out in great places like Blakes, Sadie’s, and Hooters afterwards. He was quick to learn and active all the time. Mac enjoyed an early introduction to God at the local Prince of Peace school where he was loved by teachers and students alike, except for a short period where he was known to tackle the other five-year-old kids.
In 2009, Mac moved to Woodland Park with his family and was enrolled in Colorado Springs Christian School system. He lived on a ranch surrounded by forests and became part of the wrestling team in first grade with almost the entire first grade class. He was one of the only kids to continue wrestling. Mac loved the sport and the camaraderie and continued participation until his passing. He had several very close friends, Nathan and Parker, that would attend “cookie church” with him as the local Methodist church had a very elderly congregation that loved to bake. He loved having his friends over to play games, jump on the trampoline, shoot air guns (or real guns on his dad’s range), play tag, and camp out. We could hear them wrestling and bumping around upstairs well into the night.
Due to his father’s business activities, Mac fell in love with new places and was always on planes with his dad and family going all over the U.S. and the world. Everywhere he went, he would always want to experience the local culture, food, and sightseeing. He visited Costa Rica, the Hawaiian Islands, Egypt, Finland, Australia, New Zealand, Tahiti, and the UAE. On those trips he rode camels, entered the Great Pyramids, hiked mountains and glaciers, went ziplining, kayaking, scuba diving, snorkeling, practiced skydiving in an indoor skydiving range, and even went skiing in an indoor ski simulator in the UAE desert. He was always interested in what was going on and had a thirst for adventure that never left him.
Mac was also a very active video gamer and loved to game with his friends, both in person and online. Over the years, gaming became one of his outlets. Competition and gaming was very important to him. He developed a close-knit group of friends who competed together and some of the best memories we have of Mac would be his whooping and yelling with his friends while they participated in Apex, Brawlhalla, and Grand Theft Auto.
Most importantly, it was sports that defined who Mac was in his later years. While we knew he loved wrestling, Mac approached us about joining the football team in 7th grade. Of course, we encouraged Mac to be and do what he wanted to do, so he joined the CSCS middle school football team. With wrestling and now football, our family adjusted to a demanding traveling routine that stretched over 10 months of the year with practices, team dinners, and games. We relished every minute Mac was engaged in sports, as we always wanted to support him doing the things he loved. Mac continued this schedule all the way till the end of his junior year when COVID hit and all sports were stopped. This was hard on Mac.
Mac was the consummate team player who gave all he had for the team. While he never was the best player on the team, he always had the best attitude. He had heart, dedication and he really enjoyed participating. Mac loved those wrestling trips where he would be able to stay in a hotel with his teammates and hangout away from his parents.
Mac experienced several high points in high school athletics. His football team went to the state finals and made the playoffs for the first time in years. He also made it all the way to the qualifier for the State Wrestling finals but lost out by one match. He worked hard, left a lot of sweat, and some blood, on the field. We were so proud of Mac. As his wrestling coach said, “it takes talent to win the first round, conditioning to win the second, but heart to win the third. Mac had heart.” He was a true team player and was loved by all his teammates. It was not hard to find out where Mac was, there was usually a group of young men laughing their heads off. Especially on the wrestling team, where the boys had such tight bonds.
Towards the last months of his life, Mac continued to shine as a family member. He spent time at the beach with his friends and his family in Florida and worked hard at school. He also spent a lot of time working out on his own or with friends at the gym. Mac was getting ready to join the Army to follow in his father’s footsteps. On the surface, everything seemed OK. We now know that, while to all of us Mac was…. well Mac, inside he was fighting a daily struggle with mental illness and depression and was determined not to let anyone know.
Mac was a kind, loving, selfless boy. We know he put everything he had into the fight against depression. We wish we knew he was suffering as much as he was, and we encourage anyone struggling with depression or suicidal thoughts to tell someone. Help is available and you are not alone.
We love and miss you every day, Mac.
If you are struggling to cope and would like emotional support, call the Suicide & Crisis Lifeline at 988 to connect with a trained counselor. It’s free, confidential, and available to everyone in the United States. You do not have to be suicidal to call. Suicide is preventable and help is available. If you are concerned that someone in your life may be suicidal, the five #BeThe1To steps are simple actions anyone can take to help someone in crisis.
Are you or someone you know struggling with lingering concussion symptoms or suspected CTE? We support patients and families through the CLF HelpLine, providing personalized help to those struggling with the outcomes of brain injury. Submit your request today and a dedicated member of the Concussion Legacy Foundation team will be happy to assist you. Click here to support the CLF HelpLine.