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.

 

Cameron Adamson

Warning: This story contains mentions of suicide and may be triggering to some readers.

I remember the day Cameron called me at the Pentagon, a week before his high school graduation and proclaimed he was enlisting in the Unites States Marine Corps instead of going to college. Truly not the path I envisioned for Cameron, and a very different path he was about to take. Cameron had a fund already in place to pay for his college, and he was a good student at competitive Conneaut Lake High School in Pennsylvania. Cameron surprised our entire family by telling us he wanted to enlist in the Marine Corps. As I look back, the truth is, his choice in enlisting in the military over college deserved much more than a blank stare.

Since Cameron died by his own hand in January 2021 at the age of 22, over the several months since his passing I have had some says directly to me: “suicide is a selfish act.” I was not angry or insulted, but rather very sad that people still believe this to be true. If anything, in the mind of the one who takes their own life, it’s a selfless act. In Cameron’s case, his writings, and the discussions he had before he died, indicate to me that he felt he was a burden to those who loved him. In his suffering mind, Cameron felt we would all be better off without him.

Based on my experience with Cameron the little I had as his father, I believe his mind was so tortured and he was in so much mental pain, he was not thinking rationally when he took his own life. That is not what I would call selfish. Reading online from most since his death, Cameron was the kindest, most giving and thoughtful man many have ever known, and he would never do anything to intentionally hurt anyone.

Cameron grew up in Saegertown, PA and was an incredibly bright and intelligent kid. Due to the nature of my work in the Navy, I was often far away while he stayed with his mom and older sister in Pennsylvania. Cameron was close with the entire family and despite our physical distance, we still spoke often, and he had a very happy childhood.

Cameron continued to be an outstanding student in high school. He was part of the varsity wrestling team where he excelled but unfortunately experienced a couple of severe concussions.

Communication started to fade during Cameron’s sophomore year. After a few of his head injuries, he felt depressed and pulled away from us a bit. Recovery wasn’t going as expected and he became increasingly frustrated. We were able to reel him back in for a while and it seemed as if he was all set to attend college the following year.

That is, until a recruiter from the Marines reached out and asked if Cameron was interested in joining. The next thing we knew, he was off to boot camp only one week after graduating from high school. He told us he wanted to branch out from what he was accustomed to and have his own purpose in life. After boot camp, he served a four-year enlistment and was deployed for six months to Iraq.

Upon his return, Cameron seemed like a different person. We knew Cameron had suffered from traumatic brain injuries (TBIs) while in the Marines; once in a car wreck and another while on deployment in Djibouti. He was more withdrawn from the family and preferred to be alone. A counselor suggested he was struggling with PTSD, but it was never officially diagnosed. We believe his changes in behavior were linked to the head injuries he suffered both during his time playing contact sports and in the military.

There were so many cracks Cameron fell through. I don’t think he had access to the appropriate resources he was looking for and needed. I was told he was getting help, but no one had any records of his care when I checked. He was passed around from one person to the next until his honorable discharge from the Marines. Though he originally had a job lined up, things didn’t work out as planned. I know Cameron felt left behind, watching his friends from high school going off to college, getting married, and buying a house. Yet here he was with nothing to show for his service.

Cameron was popular, talented, and loved by his many friends and family members. Yet he felt alone in his struggles.

It’s hard to see a possible lesson the moment you get the phone call. It’s difficult to find a meaning when you’re attending the funeral with their anguished mother, sister, and devastated friends. It’s challenging to feel like you’ve somehow been educated in all matters of life and death and the moments in between when you’re struggling to find their last text messages and re-listening to voicemails and holding onto whatever lingering piece of them you have left.

But time as pushed forward and the pain becomes a second skin and the longing becomes commonplace, you realize a death like this, a death that is self-inflicted and self-decided and self-manufactured, is a death with a lot of lessons.

When my son chose to end his own life, I learned that we should not blame ourselves as a family (but it is a difficult task). While there were moments, I believe we could have intervened and things we could have said, the complexity of individual’s decisions and the way in which those choices manifest are too layered and mosaic to possibly understand. We use our own hindsight against us, but even when it is 20/20, it is a filtered view. It is colored in guilt and agony and while it seems clear, it is nothing if not blurry.

I feel situational depression and in the days since Cameron died, believe it is in no way even close to what Cameron must have felt suffering from his depression. The despair and hopelessness I feel as a failed father are so tortuous, I can’t even imagine what Cameron was going through in his final days. A month or so before he died, Cameron told me he was fine and he was working to get his back on track, but also afraid. He could not (or would not) share with me what he was afraid of. Only now do I realize how much he must have been suffering.

I believe there are two possible reasons why some say suicide is a selfish act. The first may be an attempt to comfort the suicide loss survivor(s) in an effort to help shift the guilt burden (blame) to the one who died. The second reason may be that it is easier for them to say “suicide is a selfish act” rather than really try to process why someone would take their own life. Being a suicide loss survivor gives one much more perspective – I hope to use this perspective to educate others.

After Cameron’s passing, his sister Kayleigh suggested donating his brain to the U.S. Department of Veterans Affairs VA, Boston University, and the Concussion Legacy Foundation (VA-BU-CLF) Brain Bank. She had done some work and research in Boston for her PhD degree in psychology and recommended we reach out. We immediately agreed since it was a way to honor Cameron’s legacy and allow him to help others even after death. If his donation helps even one fellow veteran, he will have made a huge difference.

While there was no official diagnosis of Chronic Traumatic Encephalopathy (CTE), the researchers found disturbed white matter in Cameron’s brain. There is the possibility he was in the early stages of the disease, but it’s not definitive.

Since my son died by suicide, I learned that we rank death and, in turn, the level of mourning or heartache we should feel about it. While the result is the same, the manner in which a person dies somehow determines the manner in which the people left behind, should mourn. It’s strange, how we quantify death in order to fit our morals or beliefs or feelings of justice and vengeance.

I learned that death, itself, is strange.

I learned that while strangers react differently to the death of another stranger, depending on how they died, loves ones do not. Regardless of who or when or why or how, a loss is a loss to those who loved you most. The pain is the same. The sense of endless longing is the same. The forever wishes to see them one more time are the same.

I learned that if silence wasn’t considered a strength and vulnerability wasn’t considered a weakness, there would be far less funerals attended, and memorials visited.

I learned that there are moments in life, and in death, which do not come with answers. That while we so desperately need to understand the reasons why people do what they do or say what they say or believe what they believe, some things are not meant for understanding. That while it would calm our minds and hearts to know that our questions have conclusions, sometimes, it isn’t about our peace of mind. It is about theirs.

I learned that those left behind are not alone in their pain, nor are they particularly set apart because of it. Others have felt what you’ve felt and have tasted the tears you have tasted and have struggled to adequately describe it all. Just like you.

I learned that there is no single, foolproof path towards healing. While some need to talk, others desperately require the comfort of silence. While some seek solitude, others feel safe in a sea of strangers. While some need to saturate themselves with memories, others need distance and time before thinking about the one they lost. No way is right or wrong.

And I learned that, yes, there is a lesson to be learned at the end of every life, regardless of how that life was lost. That when the pain becomes a second skin and the longing becomes commonplace, you will be changed in a way that is both hurtful and helpful. Despite efforts to get him help, he slipped through our grasp. It is now that I must come to terms with the most brutal outcome for a parent: We could not save him.

And it is that knowledge that, perhaps, can help someone else.

Before it is too late.

I would highly encourage other families of veterans to consider donating their loved one brains as part of Project Enlist. Brain donation helps researchers gain a better understanding of the unique effects of military brain trauma exposure. I myself have also pledged my brain in the hopes of helping advance research for the next generation of veterans and servicemembers.


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. If you are struggling to cope and would like some 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. If you’re not comfortable talking on the phone, consider using the Lifeline Crisis Chat at https://988lifeline.org/chat/

Are you or someone you know struggling with lingering concussion symptoms? 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.

Mike Albarelli

 

Mike Albarelli was a magnanimous man. He was the type of guy who walked into a room and would instantly lift the room’s energy. His smile was as big and broad as his body and he had a way of making you feel like you were the most special person in the room. He loved good conversations, funny banter, and making genuine connections with people. He had a deep belly laugh and a love for his friends and family as deep as the ocean. Our children meant everything to him.

Mike and I met at Brown University where he was captain of the lacrosse team. Our very first conversation was about a Britney Spears concert we had both gone to.  I was completely taken aback that such a big, burly guy had such a soft and kind soul. A bear on the outside and a mush on the inside, sensitive but strong; he was my dream combination. We spent countless hours sharing stories, laughing, hanging with friends, and creating a meaningful life together.

He was known by his teammates as an intense player who wore his heart on his sleeve and took all losses personally, whether he had played incredibly or poorly. He was the captain of every team he was ever on. He was the epitome of a good teammate. He intuitively knew what his teammates needed to be motivated to do their best. He would listen to music to pump himself up before a game, and then once adequately amped, he would share his energy with the rest of the team.

He did everything full-force. He wanted to be the best at everything. The best athlete, friend, husband, father, brother, the best at it all. He made the most out of every moment he spent on this earth. From skiing, to fishing, to golfing, to traveling the world, he wasn’t someone who ever sat on the sidelines.

He always told our boys that three things were important: always do your best, always finish what you start, and practice makes perfect. He lived up to these ideals until he couldn’t anymore. His unfolding is hard to write about because he had so much pride and when he was in a good place, he was unstoppable.

I feel like I slowly started to lose him a few years before he passed. Around 2015, he became more distant and more disconnected from his friends and family. He fell into patterns of drinking that created a major divide between who he wanted to be and who we were seeing. He and I both knew something was wrong. His ability to regulate his emotions and the emotions of others became paper thin. He tried so hard to be the best dad and the best husband, but he seemed pulled into a darker world, a place he could not find escape from for too long. It was hard on all of us, but hardest on him. I saw so many brief pockets of hope and clung onto those for dear life.

In the end, his demons won the battle. On July 30th, 2018, while intoxicated, Mike fell down the back stairs of our home all the way to the concrete foundation of our house. The impact led to a brain injury that ultimately ended his life. He was just 38 years old.

A year later we received confirmation from researchers at the UNITE Brain Bank that Mike suffered from Chronic Traumatic Encephalopathy (CTE). This came as no surprise to me and validated our worry that he was struggling more than he ever led on.

At the time of his death he was still highly functioning. He hadn’t started losing his memory, and he was still able to successfully operate as a successful CEO of a company. He may have seemed fine to others, but he was battling something internally that was pulling him away from himself. As his wife, it was hard to watch the man you love be unable to take care of himself and his family the way he would want to.

Mike’s impact on this world was profound. He would want his legacy of generosity, kindness and passion to be passed on. I am committed to working on spreading knowledge about CTE and helping families and loved ones learn to navigate the trauma and grief that comes with this degenerative brain disease.

 

Robert “Dice” Allardice

 

Robert Duncan Allardice was born on July 21, 1947 in Plainfield, New Jersey and moved to Pittsburgh, PA as a child. He was one of six siblings (5th born) four brothers and two sisters. He participated in Boy Scouting and was an Eagle Scout. He earned two varsity letters in football as a DE and HB at North Allegheny High School, one varsity letter in wrestling (180 lb. class) and three varsity letters in track and field for discus where he held a record (which legend has it…still stands). He was captain in track and field and co-captain in football. He went on to play football and wrestle at West Point, graduating with the class of 1969.

In October of 1968 while playing for the West Point football team as a defensive tackle, number 86, Dice sustained three concussions in one week, followed by a broken neck the very next week.

Dice appeared to recover, enough so that he graduated with the class of 1969 and was commissioned in the Quartermaster Corps. He was, however, not medically qualified for the combat arms.  While at his first duty station he was rear ended in an auto accident. The resulting injury, along with those sustained at West Point, led to his medical retirement from the Army in September 1970. He joined the work force and had a successful life.

In 1996, the effects of the injuries that had taken away his dreams to serve his country began to manifest themselves more seriously. By his retirement in 2006 he was noticeably struggling, increasingly confused and losing his ability to communicate. His disease progressed quickly, systematically stripping him of his quality of life. During his courageous battle and before he lost his ability to communicate he made the decision to donate his brain to the UNITE Brain Bank for research. Robert passed away at the Durham VA’s Long-Term Community Living Center on November 7, 2014. As the story goes, 10 Games, 4 rushes for 26 yards, and Stage 3 Chronic Traumatic Encephalopathy (CTE).

Dice became the first known West Point graduate to have died with the disease known as Chronic Traumatic Encephalopathy (CTE), confirmed by Dr. Ann McKee and the research team at Boston University.

While the effects of his injuries at West Point took away his dreams as an athlete and the ability to serve his country, he never wavered in his love for West Point and his country. I believe, without a doubt that in choosing to be a Legacy Donor, Dice knew he could help to make a difference in the sport he loved. His brain donation places him at the forefront of research being done to develop safeguards to protect against brain injury, diagnose CTE in the living, and eventually find a cure for what is said to be a preventable neurodegenerative disease.

“Dice” was a man who believed that everyone he met held the potential to be his friend. He owned an infectious knee-buckling laugh, and could dance like no other. He was bound by his ties to West Point and the members of the Long Grey Line. He lived Duty, Honor, Country every day. Integrity was how he lived his life. He was fiercely loyal and an honorable man.

Make an online gift in memory of Robert


Read Robert Allardice’s West Point story here.