Ask Esther mailbag: PCS questions

Posted: August 1, 2017

Disclaimer: I am not a medical professional. The advice that I’m giving is based on my personal experience and treatments that have worked for me. Please consult with your doctor before beginning any of the treatments.

Thank you to everyone who submitted questions on Post-Concussion Syndrome (PCS) for this #AskEsther mailbag! If you need a reminder of who I am, you’ll find that here. I hope to have more content soon, so if you have questions on PCS for a teenager who has been through it, don’t stop sending them to [email protected]. Now… on to the mailbag!

From Jenn

Hi Esther — my 13 yr old daughter had a severe concussion during a soccer game over 2 years ago. She has since struggled with migraines, neck pain, her grades have suffered, and she has not been the same socially. She went through extensive physical therapy for about a year following the concussion to help her back and neck. Is there anything we can do to help her with these other things that might be associated with her concussion?

Thanks for your help!

Jenn,

I’m so sorry to hear about your daughter, and I can relate to what she’s going through. Physical therapy significantly helped me with my symptoms. The aspect of PT that was most helpful for me was vestibular therapy, which not all PT includes. Vestibular therapy can help with neck pain and headaches. In addition, my physical therapist gave me exercises for my eyes; I had a severe convergence insufficiency, which meant that I was seeing double much too far away which made reading and schoolwork difficult. I had no idea that I had this convergence issue so I’d suggest asking about it even if your daughter doesn’t have any eye symptoms. Improving this helped my headaches and made schoolwork easier.

I would also recommend Cognitive Behavioral Therapy (CBT), which is basically memory and executive functioning retraining; doing CBT made me feel confident about going back to school after concussions, and I really credit it with my success in school. Finding a CBT specialist may not be easy: make sure that he or she combines memory retraining with helpful daily skills.

In terms of school and grades, help your daughter find good advocates at school (a school nurse, teacher, adviser) since she may need accommodations such as extra time or reduced coursework. Her school may ask for neuropsychological testing in order to grant accommodations.

Other treatments that I tried were acupuncture, chiropractic therapy, massage, and migraine medications; I would suggest talking with your doctor about any of those. The Concussion Legacy Foundation has some great content on PCS treatments here.

As I understand it, and I’m not a doctor, headaches with PCS can be migrainous, and they can also be tension headaches as a result of having to try harder to stay focused.  Ask your daughter’s doctor to help her distinguish which she might be having.

You also mentioned that your daughter has not been the same socially. I have found the social piece one of the hardest things during my concussion journey. I think it is extremely important to stay social, but oftentimes social engagements seem like a burden. I’m in high school, and I’ve found that I just can’t go to parties because of the noise, stimulation, and lights, but I’ve found alternative ways to still see friends. I’d recommend finding quiet restaurants to go to dinner with friends or having friends over to watch a movie rather than going to the cinema, which can be a lot of stimulation. And please tell her not to be afraid to tell her friends why she can’t participate in certain things. I have found that while some friends cannot understand or even remotely empathize with invisible symptoms, good friends are more than happy to accommodate you.

Hope this helps, and I wish all the best to you and your daughter!
Esther

 

From Jennifer

In September, it will be two years since I was run over by my horse. I don’t remember any of it, and I was in the hospital for 3 days and 2 nights, I didn’t break anything, it was for the concussion, and I couldn’t remember what someone said to me the moment before for about 20 hours afterwards apparently. It was a rough go for several months afterwards, I’m doing much better now, however I still get light headed every time my head bends down low, will this go away at some point or can I expect to deal with that indefinitely?

Jennifer,

I’m glad that you are feeling better now, but that sounds like such an awful experience! The lightheadedness is hard—I’ve experienced it as well. One thing that may help is vestibular therapy, which helps dizziness, lightheadedness, and balance.  You might also ask a trained physical therapist or specialized eye doctor to check you for any vision problems, such as convergence insufficiency. These therapies helped to decrease my dizziness and lightheadedness.

Generally, when you’ve suffered with symptoms for a while you can think that this will be a problem forever, but I urge you to be hopeful since you certainly have been recovering since this injury!

All the best,
Esther

 

From Marrianne

Hi Esther, 

I’ve never had a concussion before until I had a really bad fall on May 10th, 2017.  It was more like a “flying face plant” to the floor, rushing through the airport full speed, and tripped over a table and went flying and landed on my face/head. Paramedics checked me out, but I didn’t want to go right to the hospital because I hadn’t seen my son in 2 years. However, the next morning the pain was twice as bad all over, & in my head and my right eye was swollen shut. My husband took me to the ER and they did a CT scan, lots of x-rays, etc. I was bruised from head to toe, but only broken nose and lots of swelling above my right eye. Really big bump on the forehead above right eye. I’ve also had my eyes checked w/ an ophthalmologist because my right eye vision is just a little off, not terribly blurry, but a little around the periphery. He didn’t find anything wrong, and said something like if there’s swelling inside pressing on my optic nerve there’s nothing he can do about that anyway. I’m hoping that the swelling will continue to go down and it will get better. I use ice packs on my head, warm wraps on my very painful neck, etc.

Previous to all this I had chronic migraines which doesn’t help matters, but my question is that as the weeks have gone on I was still having daily headaches and nausea every day which has been super bad some days. No actual vomiting, just nausea. I have read a lot since the accident about concussions and realize how important rest is, and I’ve tried in the last couple days to rest more (actually feel like I’ve done nothing, other than washing dishes and a little laundry; which is hard for me- I normally work from home, and do lots of computer work, I know the screen time has to be limited).  The last two days have been a little bit better, no nausea.

Would you still advise seeing a neurologist at this point or not?  I’m frustrated because I don’t know how much rest is rest. And I don’t know how long this is supposed to take to recover. 

If you can give any advice I will really appreciate it! 

Thank you!

Marrianne,

I’m so sorry to hear that you experienced this! I would definitely suggest seeing a neurologist since you are still experiencing symptoms.

As for rest, this was a hard thing for me to gage as well; if you are used doing a lot and always being busy it can be very hard to take time off, but it’s very important to do so, especially if you have felt better the last two days whilst resting—seems like your brain needs this. I think taking frequent breaks from tasks and especially from screen time can be very helpful. I would also recommend a yellow filter for your screen when you have to use a screen (you can use a clear plastic folder from Staples). Anything you can do to reduce stimulation to light, noise, elevated heart rate, and cognitive work would help now in my experience. Wear sunglasses when outside, when indoors face away from sunlit windows, try to avoid stimulating environments (sometimes a mall or loud restaurant can feel very overwhelming).

Some people with Post-Concussion Syndrome experience migraine-like headaches, so your history of migraines confuses things, and your vision issue may be contributing.  A good neurologist may be helpful.

Adapting to daily life with Post-Concussion Syndrome

Posted: February 7, 2017

I wake up most days with a headache. Sometimes a cup of tea does it, but other times I need two Motrin and twenty minutes more sleep.  Sometimes I need two hours and miss classes. At school, I put a strong face on. I smile, I engage in class, I work hard, and I get good grades. However, sitting in class I often find the board blurring in front of me and I have to work so hard to keep all of the writing as just one of itself. The teacher’s voice often goes in and out as I struggle to focus with a splitting headache.

During free periods, I spend all of my time doing homework because it just takes me longer to do everything.  I have to carefully plan how I study. Prior to the injury, I had an excellent memory which was advantageous for school. After, I struggled with my memory and other symptoms. I could no longer just quickly review work the night before, so I began to have to plan more before any assessment, carefully making study guides, and using mnemonic devices to master vocabulary. I could no longer sit for four hours straight and complete all of my assignments. I had to set a timer for thirty minutes, get up, stretch, do some jumping jacks, drink water, and then return back to work. I still quickly understand material, and my performance and output are as strong as they were pre-concussion – I just have to work differently. Initially it was frustrating to have to drastically alter the way that I studied, but I have made it work.

I had to totally change the way that I exercise as well.  Rather than playing team sports, running, and doing workouts specific to my sports, I found myself having to work out just to work out.  No longer able to run, I had to switch to Pilates, yoga, and light weights, always careful not to hurt my neck or back more.

It is hard to have to change so many routine things that you never imagined would have to change. Once a stress reliever and something I enjoyed, running even for just a few minutes leaves me extremely dizzy and nauseated with a blood-pounding headache.

When I’ve thrown up at school because of a headache, I had to just continue my day because I hate complaining and I didn’t want to miss school.

With a bad headache I often become very sensitive to smell. I feel bad when I turn down a meal that is usually one of my favorites and have to go to a dark room instead of eating with my family.

I sometimes get really irritable. I was a very calm and ‘go with the flow’ person, and now, sometimes the littlest things just really annoy me.

My confidence has taken a toll. When you no longer feel like yourself and struggle to remember things, you don’t feel very confident about schoolwork. I was always a strong student and now I tentatively submit my answers to online quizzes. Though I still receive good grades, they come with more work and stress.

I used to have 20/10 vision in both eyes and my eye doctor told me that I should be an aviator with such crisp vision. Now, I squint to read and my vision blurs or doubles – I don’t think I’ll be piloting any time soon.

I used to put my hair in a ponytail almost every day. Now, ponytails worsen my headache so even when working out, I have to leave my hair down or in a braid.

I sometimes wear sunglasses inside my house while doing work since sunlight and glare make me headachy. I wear sunglasses almost all of the time when I’m outside.

I randomly lose my balance and get dizzy. I guess I’m glad that I can make people laugh as I topple over or near-miss a wall, but it is disconcerting to walk around when everything is blurry or have a conversation when the person is blurry and double.

I always considered myself a quick wit, and now I laugh with a considerable delay or think of a great addition to a conversation that happened five minutes ago.

All of these things show how pervasive Post-Concussion Syndrome (PCS) is. It’s not just your sport or just your academics. It’s your whole life and each little loss and change adds up.

Cindy Parlow Cone on Safer Soccer

Posted: June 9, 2015

Read more about Safer Soccer.

Below is a full transcription of Cindy’s interview:

Who is Cindy Parlow Cone:
I’m Cindy Parlow Cone. I grew up playing soccer and played a lot of different sports went on to play on the US Women’s National Team, winning gold medals in World Championships.

On coaching youth soccer and whether kids should head the ball:
For about the past decade I’ve been coaching youth all the way up to professional. Now that I’ve dedicated my coaching career to coaching youth, I have made the decision after listening to all the research and what’s coming out and how dangerous it is for kids to head at early ages, I’ve taken it out of the curriculum. I don’t teach my kids how to head. Instead I teach them how to bring the ball down out of the air with other parts of their body. It wasn’t until I was 18, 19 years old when I finally learned the technique of heading, and I went on to become one of the best headers in the world, scoring a lot of goals for the US Women’s National Team with my head. So, I’m a true believer that the correct technique and all of that can be learned later in life.

On Safer Soccer:
I support the Safer Soccer campaign for no heading under the age of 14. Taking heading out of the game obviously isn’t going to take away all the concussions in soccer. You’re still going to get concussions in other ways, but if we can take away that huge percentage and make the game safer for kids today. I think we, as adults, we have a responsibility to do that.

 

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.

Rowan Stringer

Rowan was 17 years old and in Grade 12 (Senior) when she passed away following a concussion received during a rugby match for her high school team. A Coroners Inquest into her death held in May of 2013 concluded that she died from Second Impact Syndrome and had likely suffered two previous concussions in two games during the five days preceding the match where she suffered the fatal injury.

Rowan was captain of her high school team and also played for the Barrhaven Scottish RFC. She played ringette, soccer, flag football, lacrosse and was also a keen snowboarder. She had been accepted into Ottawa University to study to become a Registered Nurse.

Her death and the results of the Inquest spurred her family to campaign for “Rowan’s Law” in Ontario. The law, the first of it’s kind in Canada, came in to force on September 9, 2016.

Keep Your Eye on the Ball (and Your Brain)

Posted: November 16, 2015

A naturally verbose and upbeat man, Chuck inevitably began to speak with his neighbors. These lucky fans were in for a treat. They were sitting next to a legend, someone who had spent the last ­­182 days on the road and seen 223 baseball games at every major ballpark across the country. It was the second to last day of an epic trip that spanned the entire 2015 regular season. And the fans next to Chuck were probably debating whether or not to stay for the whole doubleheader.

Chuck’s baseball knowledge dwarfs even the most avid fans’, yet he doesn’t flaunt his acumen. He loves the game, and talks baseball for the sake of his passion. We’ve all spent a bus or plane ride trapped next to a chatty know-it-all, but that is never the experience with Chuck Booth. He is a pleasure to talk to and gives off a general aura of wellbeing and good intentions. But that hasn’t always been the case.

 

Chuck devoted his teenage years to the baseball diamond and football field. He threw himself into sports with the same passion that has carried him across the nation over the past year. However, his early athletic potential was jeopardized by a series of concussions both on and off the field that ultimately left him unable to play. All in all, Chuck recounts nine total concussions, one of which happened during an automobile accident in September of 2010.

Some of the symptoms from Chuck’s head traumas persist, although many have subsided or improved. He still battles dizzy spells, blurred vision, migraines, and sensitivity to light. However, these nuisances are a far cry from the man who once had to shut himself off from the world, a man that other people considered avoidant.

Chuck embarked on his journey across the country in part to recover from his most recent head trauma. With a dictate to take 6 months off from work, Chuck approached the problem proactively. He didn’t surrender into a concussed oblivion and let the symptoms rule him. Instead, he used the insurance settlement from his accident to tour the United States and do what he loves best: eat, breathe, and sleep baseball.

With a budget of just 100 dollars per game, Chuck made it work. His meager allowance proved sufficient for transportation, lodging, tickets, and food. Chuck attributes the daily grind of planning and putting one foot in front of the other as an essential factor in his progress. It has allowed him to reclaim his seat as the jovial fan that is a pleasure to be next to.

While on his admirable (and envy-inspiring) journey, Chuck helped promote awareness for his condition on behalf of the Concussion Legacy Foundation, which he selected as his charity designation. Chuck spoke candidly about his experience and why concussion awareness is so important in dozens of interviews that have appeared in newspapers, television, and online.

Chuck’s bitter history with brain injuries is one that many ex-athletes can identify with. But his tale of therapeutic recovery-via-baseball – like that rare MLB tripleheader – is rather unique.

Brandi Chastain on Safer Soccer

Posted: July 1, 2015

U.S. Soccer icon Brandi Chastain discusses the legacy that she wants to leave: making the game of soccer safer for kids by eliminating headers until age 14.