Days 19-21 Finding the Real Germany

Saturday Day 19

Meetings with German Team Docs

This morning our first stop was to Dr. Wego Kregehr, a top sports medicine doctor who works with multiple teams. This conversation was revealing. He said that doctors in Germany are taught that unless an athlete has a headache AND amnesia AND nausea, then they don’t have a concussion (!!). If they do have all three, they are immediately taken for an x-ray, and if the symptoms don’t clear within 48 hours, a CT as well. Then if the player is still symptomatic, they might get an MRI. As you probably know, all 3 of those tests will be negative when an athlete has a concussion, so it is bad medicine. To compound the problem, it doesn’t appear that the German medical community is aware of how useless the tests are for concussion, so when all the tests come back negative, the athlete is told that they are healthy , and that the problem must be psychological. It’s shocking in the days of the internet and the Zurich guidelines that this world exists. And it’s not just that the teams or team docs that are wrong – sports teams are insured by a workman’s compensation-type system here. I was told the insurance apparently refuses to continue paying players when there is no evidence of physical injury. Dr. Kregehr said he’d be happy to help try to change the system.

We then met with Dr. Jurgen Schultz, another team doctor. He really connected with the issue from the public health side, and was interested to think about how we expose children to brain trauma. He is hopeful the German government gains interest.

Drinking and Shooting Guns

The end of the day was one of the trip highlights. Marco took us all to his village’s Schützenfest, which is an annual festival held by the local gun club. When I was told that the gun club had invited us to boozefest, I had my doubts about my ability to make it back alive, but I trusted they knew what they were doing. It was something – a tent in a field with all the members wearing light green jackets with all sorts of medals. There was schnitzel as far as the eye could see, beer, and old German songs being sung. We were far enough outside of Hannover that the big American and the Canadians at the event were a big point of discussion – which meant many strangers buying me beers.

They did have a ‘shooting range’ which was a carnival trailer, and I took on the princess of Schutzenfest in target competition, and lost. Like many post WW II cultural community organizations, whether in Europe or the states, they were having difficulty attracting younger membership, which meant I danced with many 50 year old women to a combination of local songs and 80’s American music. It will be one of my favorite memories of the trip.

Sunday 20 & 21

Drive to the Baltic Sea

The Goulet family and I drove up to the northern coast of Germany for some brief R & R. We stopped in Lubeck just to see an amazing old church dating back to the 13^th century. The most remarkable thing is the church bell. The church was bombed in World War II, and the enormous church bell fell hundreds of feet to the ground and broke into pieces. The bell has not been moved since.

We then went to visit an old friend of Kerry’s who is the top professional hockey photographer in Germany. He and Kerry swapped concussion stories, but perhaps the most interesting was until Kerry started working on the concussion issue, he thought he’d had one concussion in his life. Since he’s become more aware, the numbers continue to go up. He discovered one when the photographer sent him a picture from fifteen years ago of Kerry on his back on the ice, bleeding from the mouth with his eyes half closed. He remembered getting slammed into the boards, but didn’t recognize that he was clearly out of it. It’s amazing how we remember old concussions.

We then drove up to Timmendorf Strand (beach) where we stayed in a resort town that Kerry “owned” for about ten years. He even generously took us to the arena where his jersey hangs in the hockey arena. Unfortunately he was not signing autographs that day…

Day 17 & 18 - Ich bin Ein Berliner

This morning I went to see Dr. Birgit Wetterauer of the BMBF (Federal Ministry for Education & Research), an administrator in the Referat 615 Gesundheitsforschung (Health Research). She discussed the newest European Commission Joint Programming Initiative JUMPAHEAD. JUMPAHEAD is designed to coordinate EU research activities on neurodegenerative diseases. 23 of the 27 EU countries will be participating. It is unprecedented for the EU to coordinate activity of such a narrow field (other Joint Programs include energy and the environment), but they realize if we don’t get the neurodegenerative diseases problem solved we’ll bankrupt healthcare. We discussed the various influences and expectations on the program, and it gave me a good appreciation for coordinating something that size.

Next I went to Parliament to meet Beate Hasenjager, a Parliamentary Official now working with the budget committee. Beate was an Eisenhower Fellow back in 1999, where she went to learn more about how a single currency, the Euro, would affect international trade. We toured the government buildings including the historic Reichstag Building, where parliament meets, where we had an amazing view of Berlin. It’s amazing how everything is discussed as pre and post 1945, and pre and post the Berlin wall falling. It’s hard to imagine what this place was like.

After taking me to lovely lunch that still includes no lettuce, cucumbers, or bean sprouts, she dropped me off with Rudi Mollenhauer and Dirk Jacobsen of the Sportcommittee of the German Parliament. Yes, they have a sport committee – that’s great. However, in all of their years of experience, no one had ever raised the concussion issue with them, which is shocking. After I presented, they were extraordinarily receptive. Dirk mentioned intervening with a youth soccer coach earlier this year to tell him to stock practicing headers with the 7 year-olds so much. After reflecting, he said it is interesting to think he spent the day prior on a conference call with the World Anti-Doping Agency, the EU, and Interpol to decide the amount of legal performance enhancers one can carry on their person (apparently it’s some), but no one had ever raised concussions and CTE. They will be sending around a packet of information from me to every member of their committee, and we shall see where this goes…

I had enough time to hit one museum, so I stopped by the Museum of Medical History on the Charitie medical campus. It used to be the Museum of Pathology, so they had every disease known to man in a jar. It was quite unsettling. Thank goodness for modern medicine.

Day 18

Today started slowly. I had a meeting with the German Olympic Committee pushed back to next week in Frankfurt, so I rented a bike and rode around the Tiergarten, the main public park in downtown Berlin. It’s also interesting to consider what Berlin was like before the wall came down, and the pains that have been taken to reunite the city and the country. It was most interesting to see the marks that war leave on a city – nearly all the statues of the Tiergarten are ravaged with bullet holes. The signs say that while many repairs have been performed on the statues, they’ve left the bullet holes – I imagine as a reminder. It’s a stark contrast to Dublin, where a taxi driver made sure to point out the Dublin post-office, where there are a handful of bullet holes from a major clash with the English. But that was about it. There are so many bullet marks in Berlin they are scarcely worth mentioning.

Midday I took a train to Hannover for a tour based on the friendships of Kerry Goulet of www.stopconcussions.com. Kerry, a Canadian based out of Toronto, was a big time professional ice hockey player in Germany a few years back playing until he was 40. He became very close to the current General Manager of the Hanover Scorpions Marco Stichnoth, and Kerry is actually here with his girlfriend Toni, he brother Lawrence, and his nephew Brendan in Hannover for Marco’s daughter’s christening. Marco and Kerry set up some meetings with all the top sports medicine doctors in Hannover.

I was picked up by David Dale, the Scorpion’s athletic trainer. David grew up in Britain and came to Germany at 17 as a soldier and stuck around. He is a very helpful guide through the German sports world. When we began planning meetings, he said it was tough to find anyone because, “We don’t have any concussion experts in Germany.” First we went to see Dr Axel Partenheimer who works for the Hannover 96 soccer team of the first division. He said that concussions are not recognized in Germany. He agreed that based on our evidence that brain trauma should be looked at further, but he was not at all confident that, for instance, we would be able to convince soccer teams to offer guidelines for headers like America has pitch counts for baseball. However, we had a great conversation about all the organizations and mechanisms in place to create change, and he said he would be happy to help raise awareness in any way possible. It’s interesting to consider that changing the culture of American football was aided by the fact that all the thought leaders in the sport are in America. With hockey, most thought leaders are in North America – and the ones that needed culture change definitely are, as in Europe hits to the head are not allowed. Soccer and rugby will be much more difficult, as there are so many countries and languages involved.

Day 15 & 16 - German Soccer Federation and Beethoven

Day 15

DFL

This morning I headed to Frankfurt to meet with Tom Bender, General Manager of DFL (Deutscher Fußball-Bund), the German Football League, which I was told is marketing and business arm of the German Football Association. The meeting was set up by former EF Miriam Merckel, who apparently is a big deal here, because Mr. Bender did not know why we were meeting, but trusted Miriam.

I told him and his team the work we were doing, and that German football almost certainly has a big concussion problem below the surface, and that in the next few years we will find CTE in a former soccer player… and then I asked his thoughts. All of this was new to Mr. Bender – he’s more focused on the business aspects of DFL, and he has not discussed this issue in depth with his doctors, which is surprising, and then again not surprising.

He told me his sub-organization is not responsible for rules or training, but that he would like to be helpful. He offered to include concussion information in their marketing publications and get me in touch with a top doctor there. He was genuinely interested and helpful, which I appreciated. Andreas Nagel, VP of Competition, had the most interesting question. He said, “Do you think the major sports leagues in charge of youth sports will feel threatened by the information and not want to be helpful?” Intuitive. I said that’s why I’m starting at the top with them. We’ll see where this goes.

At least DFB was more helpful than the German Handball Federation, which is a violent and popular sport here. This is the email my program manager got back after she requested a meeting to discuss concussions in handball.

Dear Mrs Ganter-Richter,

after talking with the leading doctor of the German Handball Federation, Dr. Berthold Hallmaier, we regret to inform you, that we cannot be of help (for your request). None of the doctors, which are active in treatments provided by the German handball Federation, is a specialist in this field. Also we do not have any information or statistics about the injuries you mentioned.

Best regards,

BRILLIANT. They don’t have any concussion experts or and never bothered to keep statistics, so they don’t have a concussion problem...

Too bad they can get away with it - for now.

Bonn and DZNE

After the meeting I took another train to Bonn, the former capital of West Germany. It was another place that seemed to be calling to me, considering the picture on the right is 'art' in the center of town - it's the two saints the church behind was named after. Well, it's their five foot tall heads.

I met with Pierluigi Nicotera MD, PhD, the Scientific Director & Chairman of the Executive Board Deutsches Zentrum für Neurodegenerative Erkrankungen (DZNE). The German government recently launched a national research institute on neurodegenerative diseases, and right now they are receiving 70 million euro a year. It’s one of the largest federal neurodegenerative research facilities in the world, perhaps only behind NIH.

I was joined at the meeting by Sabine Ganter-Richter, my program administrator that has been setting up my meetings and coordinating my travel for this trip. She lives in Bonn and has done incredible work, and it was nice to put a face to the hundreds of emails over the last 6 months. I didn't have anyone to take the pic, so it's a bad selfie, but it's all I have.

I couldn’t have been happier – Dr. Nicotera did not realize CTE research had advanced so much, but he could not have been more supportive. He is an expert in cell death, so CTE is right up his alley. Do you realize when you are sitting in a room with someone and that they are, like, standard deviations smarter than you? Where you are just trying to keep up? He was that kind of smart, which explains why he is in the position he’s in. In 5 minutes he laid out the research plan that he would pursue from here – which luckily mirrors closely what we have planned. (I recruited smart folks at BU too)

The DZNE is about to launch a longitudinal study of the population, and will follow 30,000 people with MRI’s every 3 years. Because of our meeting, he said he may delve further into sports and trauma history of those 30,000 subjects. Of course we also talked brain bank and other things, and Dr. Nicotera was really open to anything. This place is great. If only he could talk to the handball people…

Bonn is also the birthplace of Beethoven, so here is the obligatory pic of the house in which he was born.

Day 16

Traveled to Berlin - my bags made it too, so nothing to report yet.

Days 13-15: Terror Tour and Bavaria

Day 13

Breakfast with a Fellow

We met Dr. Lourda Geoghegan for breakfast. Dr. Geoghegan was a fellow only last year, and took Nicole and me on what I read on Wikipedia is affectionately referred to as a “Terror Tour” – a double decker red sightseeing bus that happens to roll through some of the more dangerous neighbourhoods of Belfast to display the “Peace Walls”, which are up to 20 foot barbed wire walls cutting between neighbourhoods which were assembled over the years to try to keep the violence down at night. The locals, still socioeconomically disadvantaged, don’t appreciate being living history or part of a tourist attraction, and we were greeted with many middle fingers.

Less depressing attractions included the dock where they built the Titantic, which is still a major source of pride. I asked a local about that – because it sank and all - and he pointed to a t-shirt at a tourist shop:

Titanic

Built by Irishmen

Sunk by an Englishman

The tour guide also mentioned that the iceberg was Canadian.

Day 14

I flew from Dublin to Frankfurt and caught a train to Wuerzburg, Germany. Smooth ride except Aer Lingus only sent one of my bags. This could be bad.

Day 15

Today I am in Wuerzburg, Germany, to present twice at an experts meeting put together by neuropsychologist Gerhard Mueller, who runs one of the few sports concussion practices in Germany. Dr. Mueller’s hope is that I can help convince local neurologists, insurers, and sports administrators that concussions are something that needs to be taken seriously.

Dr. Mueller offered to take me sightseeing prior to the meeting, so he picked me up and we headed into the city. Wuerzburg is tucked away in the rolling hills of northern Bavaria and is a university town of about 200,000 with tremendous medical expertise, history, and vineyards.

We started at the Wuerzburg castle, home of the Bishops of Wuerzburg since around 1200. It is surrounded by 3 steep slopes, giving only one approach for attack, which is part of the reason it’s only been captured one time. In the war against the Swedes, which I missed in my world history class, the castle was under siege. The Bishop’s forces sallied forth for a brief and successful attack, but when they retreated back to the castle, too many dead bodies were on the drawbridge to close it, and the Swedes were able to enter. I thought you’d find that interesting.

I also saw my first medieval pool in the courtyard of the castle – but it was for horses.

Sometimes I think this trip is fate, and today that was because I entered the chapel of the castle to find the tombs of the bishops of the castle, with their images carved in stone above their tombs. Gerhard explained that when the bishops die, each is buried in three separate places. Their body goes to a monastery in the countryside, their hearts to the Wuerzburg Cathedral in town, and their brains lay right under my feet. So if I ever want to explore brain trauma practices of the last eight centuries, I know where to look!

On the way to the Bishop’s palace, an UNESCO heritage site in the city, I mentioned to Gerhard that I’ve been told not to expect German athletes to want to participate in research involving brain donation due to practices of the Nazis. Gerhard told me that only around 10% of Germans are organ donors or willing to donate their bodies to research – Germany has an opt in system like the US, unlike Belgium, where you are presumed a donor unless you actively opt out. Gerhard explained that he understands their hesitation, as during the Third Reich his own great aunt, who had schizophrenia, died while part of a forced ‘hunger experiment’, which I can only assume meant the studies where they see how long people last without food. Horrifying.

The palace was a sight to behold, built in the early 1700’s and reminiscent of Versailles. Much of it was destroyed near the end of World War II – in fact, almost 90% of Wuerzburg was bombed by British and American forces in March, 1945. The palace holds the world’s largest fresco painting north of Italy, and it survived the attack but was not exposed to the elements. It shows scenes from the five known continents (Australia and Antarctica weren’t known to Europeans yet). There is a statue to an American General who committed scarce resources to saving the fresco once we took the city.

After the tour Gerhard and I went to the experts meeting. It was a great opportunity to share our work and learn about the current practices in German. The good news was that Gerhard and his team were up on the latest and greatest in concussion. The bad news is that for many in the audience, this was the first time exploring this issue, and even the top pro sports teams don’t have concussion experts involved in the care of patients. One neurologist complained multiple times that without an algorithm based on MRI or something, it is impossible to know what to tell patients. I said, yes, we need more guidance, but we are years away from that and we still need doctors to see patients with concussions, so suck it up and pay attention.

There were two members of the media there, one print and one television, so we got the word out and had a great discussion.

One of the more enlightening points was that German sports do not have the same school-based infrastructure that the US has. Athletes play for their local club team, and they pay to participate. One key takeaway is that there is no obvious and easy legislative or governmental method through which to mandate, for instance, concussion education. The other piece of bad news is that as academic competition grows, private clubs are losing enrollment, so some presumed that they will not be eager to sound the alarm that sports are dangerous for the brain…

The good news is that my bag finally arrived at 8 pm.

Day 12 - Major Presention and then to Northern Ireland

Presentation at Beaumont Hospital

I was invited to present to about 40 members of neurological faculty at Beaumont Hospital by Dr. Michael Farrell. Dr. Farrell is a neuropathologist who runs the Dublin Brain Bank out of Beaumont Hospital. It was a tremendous opportunity and a well-run morning chaired by Professor Tim Lynch. In the audience were the best experts of Ireland, including Professor Orla Hardiman, an international motor neuron disease expert, as well as Professor Jack Phillips, author of the Ireland national report on traumatic brain injury.

After my presentation, a team presented a case study of an Irish farmer who used to be a boxer and developed cognitive problems, paranoia, and motor issues beginning in his late 50’s. It was interesting – in the discussion of potential diagnoses, the doctors in the audience leaned on a probably diagnosis of Alzheimer’s disease. They interpreted the farmer’s cognitive test scores over time along with imaging of the brain as likely Alzheimer’s. To me, it illustrated the urgency for developing a clinical diagnostic test for CTE. The doctors couldn’t discuss CTE because they have no familiarity or training with CTE, so the discussed what they knew (which is of course what they should do in this teaching situation). Dr. Bob Stern will be launching a very interesting clinical research program soon, and I am hopeful we can eventually provide them with tools to discuss CTE this situation.

Next came the pathology report – I shouldn’t discuss the findings as they may be published, but there was obvious interest in this case being a possible case of CTEM. My new Irish generously offered to send slides to Dr. McKee for her review.

It was a great experience – Professor Phillips said – and I’m paraphrasing here because I’ve had too many concussions - “We’re hearing what is happening in the US and we’re on board.”

In the audience also was the top journalist on the issue of rugby and concussions for the Sunday Independent, who conducted a short interview and then was roped into driving Nicole to the train station for our 11 am to Belfast. Along the way I told him the difference Alan Schwarz of the New York Times made in advancing and accelerating concussion policy change in youth sports by committing the time to learn about the history and science of the issue. I hope this journalist takes a similar interest for Ireland, where just last week a top player in the Ireland League championship game was clearly concussed on the pitch. Instead of removing him from play, they stalled the game for a minute or two until he could balance again and then left him in. Two minutes later they asked him to perform a free kick (like a field goal in football), which is usually a simple maneuver for him. Guess what? Shanked in wide right, as he was suffering from the acute effects of brain injury… we have work to do here, but at least the positive was that no less than a dozen doctors, taxi drivers, and athletes mentioned their unease with it to me.

Trip to Belfast, Northern Ireland

Meeting Dr. Webb

The train to Belfast took us up the eastern coast of Ireland, and I understood why so many people visit the countryside. Too bad I didn’t have the time. More on Belfast tomorrow, but I was put to work immediately meeting with Dr. Michael Webb, one of a very small number of concussion experts treating elite athletes in Northern Ireland. We discussed the problems with rugby – in fact Dr. Webb gave a presentation to the Irish Rugby Board last year pushing hard and providing evidence for a 10 minute “brain bin” to evaluate players with suspected concussion. At the time, he said it went over like a lead balloon. I think he will be successful in the future.

Presentation and Dinner with Ireland Football Association Doctors

We were then picked up by Dr. Sarah Lindsey and her husband Dr. Andy Massey, who were essentially the other two doctors in Northern Ireland interested in concussions and working as team docs for pro sports teams. They asked me to put a presentation on at the Irish Football Association – where Dr. Massey is the top doc - and invited other doctors and people interested in the issue. There is an article about it here.

Sarah is the team doc for the minor pro hockey team in Belfast, the Giants, where she often pulls double duty for both teams. She said multiple times she has evaluated an opposing team’s player, diagnosed a concussion, and told the coach he can’t continue to play – only to see him back on the ice in a few minutes. She said the referees have been no help in these situations.

One of the docs who did join, however, was a world renowned expert in knee constructions. He gained that reputation by fixing so many of the ‘knee-capping’ shootings from the “Troubles” that existed in Northern Ireland through 1998. Shootings and bombings were so common that the two major hospitals for Northern Ireland – one for Catholics and one for Protestant – became top hospitals for trauma injuries simply due to experience.

It’s amazing to think of the old struggles. For those who are too young to have this taught in school, the Troubles was a 30 year campaign of terrorism between a group of primarily Irish and Catholic nationalists who wanted Ireland to be reunited under Irish rule, and primarily Protestant loyalists that wanted Northern Ireland to remain part of the United Kingdom. Over 3,000 people were killed since the Troubles began in the late 1960’s, and things are now recovering since the 1998 cease-fire. Andy’s father was a police officer when he grew up, and he said that the routine growing up was that to go to school, his father would look under the car for a bomb, then drive up and down the street just in case he missed it, and then return to let Andy and his sister in the car. Every day. They also informed me that the Europa, where I was originally staying, was famous for being the second most bombed hotel in the world, with 38 successful out of 67 attempts. Lucky break on the change. I’ll be taking a tour of Belfast tomorrow before heading back to Dublin.