Pucci and Decker: Women's Hockey & Concussions

Here is my interview with Josephine Pucci and Paige Decker who were both featured to today in the well-done NYTimes article by Seth Berkman. Pucci and Decker will be speaking on the female athlete panel at the Feb 2016 PINKconcussions International Summit.  Josephine Pucci was a player and captain of The Harvard Crimson Women's Ice Hockey Team and United States Women's National Ice Hockey Team. Paige Decker played on Yale’s Women's Ice Hockey Team.

I know you both suffered a career ending concussions playing hockey, but tell me what playing hockey meant to you? What did you get from playing hockey that you couldn't get anywhere else? 

USA Hockey/Nancie Battaglia

USA Hockey/Nancie Battaglia

Pucci: I have spent many hours playing ice hockey and training, making long car rides to games and practices, and enjoying time with friends from the hockey community. My whole family was involved – my two younger sisters played, my dad coached, my mom was always driving us and supporting us. It meant a lot to us for many years!  I gained life-long lessons and life-long friendships. Through hockey I have experienced some of the best moments of my life and some of the toughest.

Decker: I started playing hockey at age four and competed until I suffered a life-altering concussion at age twenty-one while playing at Yale. Hockey kept me driven and focused during the most formative years of my life. It gave me the opportunity to travel across the continent and compete with and against some of the best players in the world, all while learning valuable life lessons, pushing my body to its limits, and creating friendships that will last a lifetime.  It taught me the true meaning of hard work, resilience, determination and teamwork.  Hockey is a special sport and will always have a very special place in my heart.  

If you had a daughter who wanted to play hockey, would you let her?

Pucci: I have seen negative consequences that can occur from head injuries, but I have also seen the good that comes out of hockey. Right now we just don’t know enough about concussions, and I hope that we know more by the time I have kids who are ready to begin playing sports.

Decker: The sports climate is beginning to change as a result of concussions.  I think by the time I have to make that decision, hockey will be safer and we will have a better understanding of concussions.  

If you let her play, what would you do differently?

Pucci: I would educate her and make sure she has an understanding of concussions; although sports teach players how to be mentally and physically tough, concussions are not an injury anyone should “tough out”.

Decker: I would make sure she is educated on concussions and how to handle them if she were ever to get one.  I’d get her in front of the right doctors for evaluation and also teach her some neck strengthening exercises as a preventative measure to combat concussions.   

What would you look for in a coach or a team as far as supporting safety?

Pucci: Safety should always be the priority, especially when it comes to your brain.

Decker: It’s crucial that coaches, teammates and trainers are vigilant when it comes to identifying and reporting concussions.  No one, whether directly or indirectly, should ever pressure a player with a possible concussion to play.  The “suck it up” culture in sports cannot apply in the context of brain injuries.

When and how did you first learn about concussions?

Pucci: Around age 10 I hit my head pretty hard while snowboarding; I did not know anything about concussions but I remember the word “concussion” being thrown around as a possible injury from the fall. Years later I saw a youtube video of Flyers forward Sami Kapanen getting checked and then falling numerous times on his way back to the bench. Even then, I had absolutely no idea how serious concussions could be. It wasn’t until I got a few concussions myself when I actually understood how life-changing they could be.

Decker: I don’t remember them being an overly common injury while I was in high school, but at Yale many players on my team suffered concussions so I became more familiar with them that way.  

When and how was the first time your hockey team officially educated you about concussions?

Pucci: I cannot remember being successfully educated on concussions on any team. Unfortunately, most of what I learned is from having concussions myself, speaking with doctors, and doing research. I wish I knew then what I know now!

Decker: At Yale our team (as well as every other varsity team) was required to watch a 10-15 minute educational video on concussions before every season.  

When did you first play hockey and have an athletic trainer as part of your team?

Pucci: In high school

Decker: In high school we had one trainer who handled the needs of every sports team.  It wasn’t until playing hockey at Yale that a trainer was paired specifically with one of my teams.  

Did you ever hide a concussion from a coach or trainer? Or did you know of teammates who did?

Pucci: I never lied or hid my symptoms; for a couple of my concussions I did have a mentality of wanting to get back to my sport as quickly as possible. It was not until my most serious concussion when I realized that I needed to be patient and that getting my full health back was more important than anything else.

Decker: Absolutely. I played hockey with what ended up being a career-ending concussion for two straight days before reporting it to my trainer.  I know of plenty of teammates who have done the same, which is a big problem and something that needs to change.  

How many concussions have you had?

Pucci: I have had many jolting hits throughout my career. During my time in college, 2 of my concussions led me to miss a few hockey games and miss a couple of my classes; 1 of my concussions forced me to miss school and hockey for an entire year.

Decker: One. I’ve taken plenty of sub-concussive type blows but the concussion I endured in November of 2013 was unlike anything I had ever experienced before.

Tell me how the medical community supported you and helped your healing?

Pucci: During all of my concussions I was told to rest until the symptoms subsided. It was not until my most serious concussion when I was offered an active approach to overcoming my symptoms. I had brain scans after 2 of my concussions, I have had neurocognitive testing done, and I have done many eye exercises.

Decker: It took me a long time to find the right doctors to help me, but a year and half into my recovery I went to a concussion program called Neurosport in Ann Arbor, Michigan and it began to turn things around for me.  The doctors were able to identify the issues with my neck that were perpetuating concussion-like symptoms and treat them appropriately.  They have been incredibly supportive throughout my recovery and I feel so grateful to have found them.  

Tell me any examples of how the medical community did not support you and if it was a barrier to your treatment?

Pucci: There are times when my concussions could have been diagnosed sooner, or when I should have had more time off before being cleared.

Decker: I generally felt really misguided until I found the Neurosport concussion program.  Many doctors were supportive and did what they could before then, but simply didn’t know how to help me. Some actually suggested my symptoms were all in my head and many gave me incorrect treatment. This struggle to find answers is the biggest reason I started my blog, The Invisible Injury (www.theinvisibleinjury.net), which details my two-year long concussion journey. We need to have better systems in place to ensure that concussion patients get the correct care on day one

In my research study comparing female and male athletes and why they hid their concussions, I found that females were more likely to hide concussions than men due to lack of awareness and lack of resources (an athletic trainer to whom to report). What is your experience compared to my findings? 

Pucci: I certainly do believe these findings. If athletes are not aware of the seriousness of a concussion then they may be more likely to respond to them the way they have learned to respond to every other injury - to play through it. And I think lack of resources, as well as lack of good resources, is true; it is crucial for trainers/coaches/doctors to be proactive and knowledgeable. I think trainers/coaches/doctors have the ability to really influence the concussion culture among players. If trainers are not proactive enough, players may think it is okay to play through brain injuries. However, if trainers are too strict, and don't treat concussions on a case by case basis, then that could also lead players to hide concerns. Sometimes athletes may not even know if she has a concussion, and during these instances athletes need to be honest and hopefully trainers are equipped to act accordingly. 

Decker: These are very interesting and informative findings.  For me, I would say my reasons for hiding my concussion erred more towards sports culture and allegiance to team.  However, I was definitely not fully aware of the risks of continuing to play with a concussion so that factored in as well.  

Thank you for your time, Josephine and Paige. I look forward to hearing both of you speak at the PINKconcussions International Summit on Female Concussions and other TBIs.

The BEST ONLINE Concussion Education Resources: 3 Videos and an App

 

These three videos and app can provide you the motivation, the education and the tool YOU CAN USE to help any child or adult with a possible concussion.

It is always best to have an athletic trainer be the first responder to a possible concussion, but without an AT, here is how a student, parent or volunteer coach can prepare:

Why you need to be educated? 

Video recommended for middle and high school athletes, coaches and parents. Parents, please watch first before showing to younger children. 4 minutes

What you need to know? 

Video recommended for all age kids plus coaches and parents. Video uses humor to educate. 4 Minutes

UPDATE: The term "Rest" used in the video is now referred to as “Reasonable Rest” or “Sensible Rest.” The outdated treatment plan of laying in a dark room for weeks at a time has been shown to increase anxiety, stress and add to the recovery challenge. Too much activity is also detrimental. Finding the sweet spot in-between is a joint effort of the concussion team consisting of the medical provider, family and school to assess and plan for each individual student. 

How best to recover after a concussion (but watch it now)

Recommended for kids, parents and coaches by international experts, Dr. Mike Evans and Dr. Gerry Gioia.  11 minutes

THE APP to have on your phone when a possible concussion occurs

FREE SmartPhone App guides coaches and parents step by step on how to assess an injury and respond by providing current CDC guidelines on when a child should be removed from play and when to call 911.

This app is recommended for coaches to notify parents of a possible head injury based on the most current CDC information, and time and geo stamps the final report. This report is emailed from with the app from coach to parent, manager and team. The app also records information which will be useful for the doctors and parents at a later time to judge RTP and guide a recovery plan. The app is available at the Apple® App StoreSM and Google Play.

My Review of the PAR CRR App is A+

Why would this help kids? After a possible head injury, this app guides coaches and parents on how to assess the injury and how best to respond by providing current medical guidance on when to call 911 or if the child should be removed from play. The app also records information which will be useful for the doctors and parents at a later time to judge RTP and guide a recovery plan.

Example of use: A youth sport athlete suffers a hit on the soccer field. The athlete is taken to the sideline, accessed with the app and the parent is emailed the information about the athlete with ACE care materials.

What is it? An app

Who uses it? Coaches or parents

When? At the first sign of any suspected head injury

To do what? After a possible head injury, coach or parent are led through set of questions about the child’s current signs, symptoms and behaviors. The user is given a set of conditions when to stop using the app and call 911, and if none of those conditions are met then to proceed to ask the athlete how he or she feels. The app records information which will be useful for the doctors. A summary of the answers to the question can be emailed to the parents with care instructions.

How do I get this app? Download on it on your smart phone from the app store

Who supplies the info? Coach or any adult

Cost? Free

Compliance? HIPPA and FERPA Compliant

Liability issues? Could decreases liability for coach and team

No Smart Phone?

I have developed a paper version of the app above for organizations who have members without smart phones. Dr. Gerry Gioia has reviewed and approved this paper form. (click image for downloadable PDF)

The Queens Square 13: CTE?

For the last month, I thought I had found the only two documented cases of Female CTE, but thanks to a tip by the NFL Objectors I learned of 13 additional cases of possible Female CTE from the October 2015 paper, Histological evidence of chronic traumatic encephalopathy in a large series of neurodegenerative diseases. These 13 women were from a study of brains from the Queen Square Brain Bank for Neurological Studies in London and thus I have named them the Queen Square 13.

Histological evidence of chronic traumatic encephalopathy in a large series of neurodegenerative diseases

Helen Ling1 · Janice L. Holton1 · Karen Shaw1 · Karen Davey1 · Tammaryn Lashley1 · Tamas Revesz1

Received: 3 September 2015 / Revised: 8 October 2015 / Accepted: 11 October 2015 © Springer-Verlag Berlin Heidelberg 2015

I emailed with the paper's lead author, Dr. Helen Ling, to learn more about the women who were found to have CTE in this study and summarized our exchanges below.

Katherine: Dr. Ling, how many cases of Female CTE did you find in your study?

Dr. Ling: In our study, we found 13 cases of Female CTE and 19 of Male CTE (Total of 32 positive CTE cases, all with early stages of pathology) among 268 screened cases with neurodegenerative diseases and healthy controls.

Katherine: Do you know how many female to male brains were in the original 268?

Dr. Ling: I am sorry I will not be able to provide these figures for you. The 268 screened cases were the most recent consecutive cases that reached the Queen Square Brain Bank and they were not selected according to gender. Therefore, the gender distribution would have been even and I am sure of the 268 cases, at least 100 cases were female.

Katherine: Can you tell me more about the cases of Queen Square 13?

Dr. Ling: These 13 cases have mild focal histological evidence of CTE. From retrospective review of the case notes and telephone interview of the next-of-kin, it seems that they did not have any clinical symptoms related to CTE. This group of cases were obtained from those with neurodegenerative diseases such as Parkinson's disease and related conditions and some were healthy elderly individuals (included as controls). Most had history of different types of head injury.

Ann McKee's paper in 2013 showed that up to a third of autopsied confirmed cases had concomitant histological findings of other neurodegenerative disorders such as Alzheimer's disease changes. That was also our experience that a proportion of CTE cases may have other pathologies in the brain.

Katherine: Can you review the individual case histories not included in your paper and tell me more about the individual women’s risk factors?

Dr. Ling: Here is the additional data from our series:

1.       There are 32 positive CTE cases (male: female = 19: 13) among 268 screened cases with neurodegenerative diseases and healthy controls

2.       ‘Positive CTE’ in these cases means focal scattered histological changes compatible with early CTE pathology

3.       Among the 13 female, their other pathological diagnoses are: Multiple system atrophy (1), Parkinson’s disease (1), healthy elderly (4), corticobasal degeneration (1), progressive supranuclear palsy (6)

4.       Mean age of death of the 13 female with positive CTE: 84 years

5.       Potential risk factors and related info of the 13 female with positive CTE: excessive alcohol (2), suicide attempt (1), risk sports (2 – gymnastic, cycling, horse riding), falls and related traumatic brain injury in old age (11), fractures resulted from falls (8), motor accident (2), domestic abuse (1). Some cases have more than 1 of these factors.

Katherine: Why do you think there have been so few cases of Female CTE reported in scientific papers and the press?

Dr. Ling: I think the small number of female with CTE is mainly due to sampling bias in that most brain donors with a history of repetitive traumatic brain injury happened to be male and there are more male athletes in high risk sports. Whether genetic factor of the female gender plays a protective role is not known.

Katherine: Could you look at new study, Chronic traumatic encephalopathy pathology in a neurodegenerative disorders brain bank, and tell me what you think about what can be concluded about gender and female CTE?

Chronic traumatic encephalopathy pathology in a neurodegenerative disorders brain bank

Kevin F. Bieniek1,2 · Owen A. Ross1 · Kerry A. Cormier3 · Ronald L. Walton1 · Alexandra Soto‐Ortolaza1 · Amelia E. Johnston4 · Pamela DeSaro4 · Kevin B. Boylan4 · Neill R. Graff‐Radford4 · Zbigniew K. Wszolek4 · Rosa Rademakers1 · Bradley F. Boeve5 · Ann C. McKee3,6 · Dennis W. Dickson1

Received: 28 September 2015 / Revised: 23 October 2015 / Accepted: 25 October 2015 / Published online: 30 October 2015 © Springer-Verlag Berlin Heidelberg 2015 

Dr. Ling: In this paper, they looked at all cases with history of risk sports in men and checked if there was CTE pathology in the brains. The finding was: 32% male athletes had CTE pathology. Women were excluded from the screening so no female athletes were included. Non-female athletes were also screened for CTE as control subjects but 0% had CTE.

Katherine: I am most grateful to Dr. Ling and the time she made to answer my many questions and really expand our limited knowledge of Female CTE.

Dr Helen Ling, PhD, BMedSc, BMBS, MSc, FRCP(T), MRCP(UK)

Senior Clinical Research Associate

Dr Helen Ling completed her medical training at the University of Nottingham, UK. After her Neurology training, she joined the Reta Lila Weston Institute and Queen Square Brain Bank for Neurological Studies, Institute of Neurology, University College London, UK since 2008 and was awarded a PhD in neuroscience research in 2014. Dr Ling’s main research interests include clinical and pathological features of progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and chronic traumatic encephalopathy (CTE). Dr Ling is currently funded by the CBD Solution Grant to study the pathological staging of CBD.

Six Blind Men and the Elephant: The Challenge of Concussion

What is a concussion? Currently there is no MRI or CT scan that can create an image which shows what a concussion looks like (I saw some technology last week at RSNA that is getting close). 

When I had breast cancer two years ago, I was shown a white spot on a computer screen, and that spot defined my cancer. It was 2 cm in length and width. After the cancer was removed, more details were filled in about what kind of cancer I had. No one ever asked me again if I was sure I had cancer?

With a concussion, there is no visual image or scan to show the effects of this trauma on the brain. (Yes, there are functional MRIs and high tech tools in research labs, but they are showing function and no high school kid has access to them.) Doctors rely on patients to describe their own personal experience of the concussion... "How does your concussion feel to you?"

Because concussions are such intensely personal experiences, there is no one right answer for what a concussion looks like or feels like. This challenge of description can be seen in the old fable of the six blind men and the elephant.

Six blind men were asked to determine what an elephant looked like by feeling different parts of the elephant's body. The blind man who feels a leg says the elephant is like a pillar; the one who feels the tail says the elephant is like a rope; the one who feels the trunk says the elephant is like a tree branch; the one who feels the ear says the elephant is like a hand fan; the one who feels the belly says the elephant is like a wall; and the one who feels the tusk says the elephant is like a solid pipe.
A king explains to them: All of you are right. The reason every one of you is telling it differently is because each one of you touched the different part of the elephant. So, actually the elephant has all the features you mentioned.1

In the same way, "what is an elephant" is defined by different people according to their personal experience of touching one part of his body, a concussion feels different to every person as each experiences a different combination of symptoms. 

And we question people who have concussions, "Are you sure you have a concussion because it doesn't sound like a concussion to me?" We have our own experiences of what a concussion was like for a family member or a sports star and we use this to judge the concussion in front of us.

This is always interesting to me since no one ever questioned if I really had breast cancer? I wasn't asked probing details what it felt like or had to listen to a story how my case didn't sound like someone else's.

According to the excellent model by Mickey Collins from his paper, A comprehensive, targeted approach to the clinical care of athletes following sport-related concussion, a concussion has six possible trajectories/areas or (if we can stick with the elephant model) six possible parts one can feel/experience.

Source: "A comprehensive, targeted approach to the clinical care of athletes following sport-related concussion"

Source: "A comprehensive, targeted approach to the clinical care of athletes following sport-related concussion"

Starting at the bottom with the green circle and going clockwise in layman's terms: headache, neck, mood, balance, eyes, thinking/processing.

In the same way the elephant is experienced so differently by six blind men who only feel one part, with a concussion, some people will just feel symptoms in one area and others a different combination of two, three, four, five or six symptoms areas. And research is showing that women in general experience concussion in a different combination of symptoms than men. 

If a concussion is experienced by one person as injury which causes "neck and headache" issues, and by another person as an injury which causes "eyes and thinking" issues, we ask "which is a real concussion?' or "which is the more serious concussion?'"

With so much variety, it is no wonder why parents, teachers and coaches -- even some untrained doctors -- get confused what is a concussion, and what is not. We want to know what a concussion looks like - show us a photo, please!

Then there is also confusion on how to treat concussions and what is the "right way" to help someone heal from a concussion in school and at work. Well, according to the Collins' model which I personally support, the treatment depends on which of the six areas in which the patient is experiencing the concussion. Once the medical provider can figure out which of the six areas are affected then that combination of areas will determine the proper treatment and/or recovery plan. One size fits all does not work here.

I think this chart again from Mickey Collins' paper is an excellent summary as it shows that risk factors combined with the specific details about injury combined with trajectories involved = lead to which type of treatment and/or rehab is needed. I suggest reading Mickey's paper and please don't forget the story of the six blind men and the elephant when discussing concussions.

Source: "A comprehensive, targeted approach to the clinical care of athletes following sport-related concussion"

Source: "A comprehensive, targeted approach to the clinical care of athletes following sport-related concussion"