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Joyce's Trip Report
Map and Photos from Berlin - Szczecin - Kraków - Stuttgart - Bonn - Cologne - Antwerp
The primary impetus for this trip was Dr. Neumann's prize. He called me in November to invite me to attend. I had an invitation to go to Poland as well, so I exchanged fax and e-mail with Dr. Krzystolik to see if we could link the two trips together. I booked a cheap airline ticket in December, flying to Berlin and returning from Brussels. Here's a map of the itinerary for my trip.
After a convoluted airplane trip I arrived in Berlin at 10:30 pm on Sunday March 7, 1999. Luitgard met me at the airport and took me back to her apartment near the Berlinerstrasse U-bahn station, a third story apartment very much like a Boston townhouse apartment, with large, airy rooms, brightly shined pine floors, beautiful antiques, and a grand piano. She plays violin, and her partner, a conductor from Austria, plays viola. (See Dr. Hartmut Neumann playing the violin in Paris.)
Thanks to the airline delays, I had already missed the Berlin family support meeting. Luitgard told me that it was a very successful meeting. Rudolf M. came all the way from Switzerland! Dr. Kreusel from Berlin spoke about eye issues in VHL, and Dr. Luitgard Neumann spoke about DNA testing. Both of them answered questions. The group is very interested in doing more, and is investigating how to fund telephone and internet communications, to shrink the geography.
Because I arrived so late and Luitgard had to work on Monday, I went with her in the morning to the Hospital, toured her very modern facilities, met several of her colleagues, and was picked up by Peter Z. for an afternoon of touring Berlin. (See Berlin photos).
Peter and I started with a double-decker touring bus. We had the front seats on the second level, so I was able to take some photos.
In the evening the four of us (Luitgard Neumann, Peter and Sylvine Z., and I) met at an Italian restaurant near Luitgard’s apartment and had a very nice evening. I kept Luitgard busy translating for me so that we could discuss the setup of the German support group. Peter and Sylvine are very willing to help, but cannot do everything. We are hoping to find others at the meeting in Bonn who will be able to contribute more to this effort. We discussed ideas for how best to improve awareness of VHL among physicians throughout Germany and other German-speaking nations, using internet technology. Clearly the articles Dr. Hartmut Neumann has published in German have done a great deal to improve the level of information available to physicians in German-speaking countries, and the Hufeland Prize will also raise awareness both in the medical community and in the general press.
After another night at Luitgard’s apartment, and a delightful breakfast with her, I took a taxi to the Lichtenberger station and took the train north for 2 ½ hours to Szczecin, Poland.
Szczecin, PolandWhen Szczecin was a German port, through the Second World War, it was called Stettin (Shteh-TEEN). It is a large seaport on the Baltic.
Karol Krzystolik met me at the train station. Karol is an ophthalmologist, doing his Ph.D. on retinal disease, with a doctoral dissertation on VHL. See the photograph with Karol on the left (say Karl Kris-TOLL-ick), and Piotr Hadaczek (say pi-UHTT HAD-a-check), a molecular geneticist, on the right. (See Szczecin photos).
Szczecin was badly bombed during the War, and most of the historic buildings were flattened. As in East Berlin, the Socialists built very plain and boring buildings. The first thing Karol said to me was that would find Poland very different than other European countries – very gray. I thought he was kidding, as I often think of eastern European countries as a kind of black-and-white movie. But the more I saw of Poland the more I saw that it was so – most buildings were gray concrete block or stucco, or gray from the heavy pollution (much coal-generated power, no significant ecologic controls). Most people wore black or gray overcoats, with an occasional splash of color, especially in children's clothing. One woman wore a gold lamé car-coat.
There were many small stores, mostly configured as small booths with a service window on the outside. Even when you walked into them, you had to request things from the man at the counter. It seemed to me a way to conserve heat, limit shoplifting, and control crowds in a country were there are still significant shortages.
We spent Tuesday afternoon at the Hereditary Cancer Center in Szczecin, visiting in the laboratory of Dr. Piotr Hadaczek. The lab is very modern and well-equipped, and very busy. Karol's wife, Ola, works part-time in Piotr's lab.
We went to visit Mrs. J., the woman in the red sweater (see photos). Her son has VHL. Her home is typical of ones I saw – prettily decorated with a cut-linen tablecloth and many objects of Polish lead crystal. Her house was on this little street, two houses down on the right. Her son lived across the street. His brother came by during my visit, but the son with VHL chose not to come.
I spent the night at Karol’s house with his wife Ola and their bright and clever 3-year-old son Jan, variously known Jashu or Jashka, affectionate diminutives for Jan. On Wednesday we spent the morning at the Cancer Center and Karol saw a number of patients. Then he and I had a telephone conference with Marion R. from Posnan, a man with VHL who is the head of the Polish Association of the Blind. He is a Town Council member in Posnan and has twice run for the Polish Parliament. With Karol translating, we had a rich conversation. He has arranged for students at the university to translate VHLFA materials into Polish.
In the afternoon we packed up for our train trip. Karol made arrangements for our train tickets.
Karol’s brother Andy came to fetch us. We put Karol’s car into the garage, a tiny locked quanset hut in long rows of such huts in a large parking terrain, threaded with dirt passageways strewn with chuck-holes. We had dinner at Karol’s mother’s house. She is an ophthalmologist, with a private practice in her home in addition to the work she does at the hospital. Karol, Andy, and their sister Magda all speak fluent English, as their father lives in Chicago, and they each spent at least one year in the States.
We took the overnight train to Krakow. We shared a couchette compartment with four berths. Ola and I had the two bottom bunks, Karol shared one of the upper berths with Jashka. We actually slept quite well, and were wakened 15 minutes before Krakow.
KrakowThe first thing on our agenda in the Krakow area was the salt mine at Wielicsa. We checked our luggage at the Krakow central train station and took a bus to the salt mine. (See photos.) It has been continuously mined for 700 years. We were shown through three levels of the mine, out of a total of nine levels. The floors, ceilings, and walls were of salt. There were also figures made of salt, chandeliers, frescos, even staircases in some places. I bought three small "barrels" of salt, about three inches tall, as souvenirs, and we took the bus back to Krakow.
The city of Krakow is a very historic city, on the UNESCO list of historic places in the world. The Nazis avoided bombing it to the extent they bombed other cities, so the center of Krakow still has many of its historic buildings, Wawel castle, and pieces of the medieval city wall, where artists display their wares.
Ola bought pressed cheese being sold by these mountain people near the central station. It was made of sheep’s milk, about the size and shape of a lemon, but with projections molded into it. It tasted plain and salty, a little like a stiff farmer cheese.
Karol and I made phone calls in the post office off the main market, the Rynek Glowny. The decorations ae stained glass and brass and very beautiful. Meanwhile, Ola and Jashka fed the pidgeons on the plaza at the Rynek Glowny.
At 4 pm, we were met at the train station by Sigmund J., who drove us to his home in Walbrom, north of Krakow, where we spent the night. We drove an hour north past what looked to me like new construction, concrete block buildings with unfinished exteriors, sometimes incomplete. Sigmund said that they were not new, but had mostly been built in the 1970’s. Sometimes people ran out of money and left them incomplete.
Part of Sigmund’s skill as a driver was his ability to quickly avoid the many potholes on the road. It was a 2-lane highway is very poor condition, but we sped along. At an intersection only a few blocks from his house, a car pulled out in front of him and though it was not his fault, we had a fender-bender accident. Karol and Ola and I walked to his house while he waited for the police to arrive.
Sigmund’s wife Theresa has VHL, and their daughter Margit a high school student who spoke some English, holding Jashka. You can see the walls of the dining room, finished with a plaster tile effect. On the wall behind me was a cabinet with many beautiful pieces of Polish crystal. Theresa gave me a cut linen doiley she had made.
A family came to meet us, bringing me a lovely box of chocolates. Father, mother, and son Janoz sat and talked with Karol and me for two hours. They have three children, all with VHL. The children's mother died years ago of a brain tumor, and this step-mother seemed very caring and engaged in managing VHL. We talked a long time about prevention and management.
After they left we sat with Theresa and Sigmund for another two hours. It was time to put Jashu to bed, so Karol and Ola took turns settling hom down or translating for me. Theresa was diagnosed with a brain tumor, and went to Szczecin for treatment. Kidney tumors were found on both sides, and she underwent three operations in a short time. She is doing well since her surgery, and neither of their children has VHL, but both she and her husband were concerned about living with knowing that you have VHL. We talked about prevention and management, and about our hopes for these experimental drugs.
Because his car was out of commission, Sigmund arranged for his cousin to pick us up and drive us on Friday. Friday morning we were up at seven, breakfast at 8.
Misha owns a furniture store, and was clearly more prosperous. Instead of a small hatchback, he had a comfortable Opel sedan with more trunk room by far than any other car we had been in. He had a Pioneer radio and a Nokia cellular phone in the car. We traveled on better 2-lane roads.
At one point we had to stop for a train and wait a very long time for a very short train to come through. That’s Misha’s green Opel waiting for the train, then I turned to the right and took a photo of the train crossing ahead of us. Misha explained that there were two lines of track because they were two gauges, one European and one Russian. The Russians took large amounts of raw materials from the mines in Poland and shipped it directly to Russia. Now they are building a transfer station in Walbrom where goods and containers from Europe can be transferred to Russian trains, and vice versa.
We passed more and more concrete block homes, with grey and ugly exteriors. I’d say that one house in 400 was painted, but that one house was sometimes pink or purple, some vivid color making a distinctive statement.
We were driving along better 2-lane roads than we had experienced the previous day. Later, we turned onto a 4-lane divided highway, and the car slowed down. The driver said something to Karol, and Karol chuckled. "See that police car over on the right?" he said. "That police car sits there all the time, waiting to catch cars going too fast. But the locals all know that, so they slow down." As soon as we were out of sight of the police car, we sped up and sailed down the road.
There was a large plant with belching smokestacks -- and electrical station powered by coal. This electrical plant is a point of pride in the area, and appeared on travel literature from several of the nearby towns.
More and more concrete block homes. I asked if this were a sign of prosperity, but was told that most of them were built in the 1970's. I asked about the cellular phone. They are still rather expensive, and service is expensive, but telecom competition is beginning to arrive, which is expected to lower the prices, but not right away.
For example, two years ago there were hand-crank phones in Walbrom. Five years ago Karol said there were 5-10 year waiting lists to get a phone number. Young people would file an application when they turned 18, in hopes of having a number when they completed their professional education. Over these last five years, though, the waiting list has dropped to only a few months. Poland now has 20 numbers for every 100 people. The average throughout Europe is 50 phones for 100 people.
Sigmund had told us in the morning the story of how he had gotten a telephone in his new house. The house was built under socialist rule so he couldn't do anything creative with the design, and there were no telephone numbers available. His father had a business but he was retiring and was willing to give Sigmund the number. He couldn't simply do that in a straightforward way. First he had to say that he was moving to Sigmund's house, and pay a fee to have the telephone moved there. Then he said he was moving out of the house, but leaving the phone in the building. For that, he had to file another application and pay another fee. But it worked, and Sigmund got the phone.
He drove us through some small towns and back to Krakow. We checked our luggage at the train station and took Ola and Joshu to her friend's house for the afternoon. Karol and I went to visit another VHL family. Natalia has severe central nervous system damage and is paraplegic. She lies in one bed in the living room of their apartment. Her mother, age 75 with altzheimer's, lies in a second bed. Natalia's 16-year-old daughter Margit takes care of her mother and grandmother after school.
Margit opened the door for us and we went into the living room where Natalia and her mother lay watching television. Natalia has a very difficult spinal tumor that needs attention. We spoke with her about possible options, and about a process for obtaining advice on her tumor and syrinx from the U.S. National Institutes of Health. I was to carry the films back to the U.S., mail them to Dr. Choyke, and Karol would translate the medical records from Polish to English and send them via e-mail.
We had dinner at the home of Ola's mother's friend, an enginer working on electrical efficiency. She had a collection of clocks with weights, some over 100 years old. Ola made Pirogi -- dumplings, some filled with sauerkraut and mushrooms, and some for dessert filled with blueberries. We ate the sweet ones with vanilla yogurt and sugar. Delicious!
I called my friend Gerlint in Stuttgart to tell her when to expect me, and Karol took me to the train at 10:30 pm. With my new purchases, I had to expand the suitcase, and I climbed onto the train with sandwiches from Ola, into my lower berth in a ladies' sleeping car. I had the car to myself for about an hour, and later was joined by another woman in the berth above.
The compartment consisted of three berths stacked on top of one another, each with pillow and comforter. There was a space to hang a few things, and a sink for washing up. The bed was pretty comfortable. At one stop before the border a very tall Polish official came through to check our passports. Shortly after, a large and sturdy woman came through from German passport control.
In the morning we came to Dresden. I checked my luggage at the train station and went out to explore Dresden. None of the bus tours fit my schedule, so I set out with a Stadtplan (city map) and an all-day stadtbahn (bus/trolley) ticket to simply explore. An hour later I stumbled onto the museum and the Opera house, renovated from the old Dresden castle -- a beautiful jewel of a renaissance palace with moat and a fabulous collection of Dresden porcelain.
Back on the train at 11 am, I arrived in Stuttgart at 8:30 pm. Gerlint was waiting for me on the platform and took me home for a late dinner with Dietger.
StuttgartSunday we had a leisurely breakfast and went to Maulbronn, another of the UNESCO world treasures, a former Cistertian monastery which is now a boarding school, youth hostel, and tourist attraction. We explored a couple of nearby towns and discovered an old tanner's shop restored in Bremmen. It was a very interesting house and a mammoth restoration project. We had fun talking with the guide. Monday I went downtown and met Dr. Hiltrud Brauch from Hamburg and Dr. Hilde B. from Munich who had come by train to have lunch with me at the Plenum restaurant near the old castle. Dr. Brauch is moving to the Max Planck Hospital in Stuttgart where she will be doing similar genetic research. Dr. B., a retired family doctor, has VHL. She is interested in helping with the family support effort in Germany, perhaps providing telephone support.
Tuesday Dietger dropped me off at the station downtown. I got my hair cut, shopped for a hair dryer, bought some toys and a watch. My hairdressing appointment in German was quite an adventure. While my German vocabulary is quite limited, I pronounce it pretty well -- so much so that when I get to the end of my prepared sentences, people often begin asking me additional questions. I had successful asked the hairdresser for the "gleiche schnitt, aber kurtzer" (same cut, just shorter), and then she began asking me a very long question while looking doubtfully at my gray hair. "Nein, keine farbe" I guessed (no color). She fumbled for a while, not knowing how to communicate, then had an inspiration. She went over to the shelf, pulled off a bottle and read: "treatment"! She was offering to do a treatment for dry hair. They get paid more if they sell additional treatments. She was so proud of herself that I couldn't turn her down. It was fun to be pampered after all that traveling. I took the U Bahn (subway and bus) back to Plieningen where my friends live to make my business calls.
Wednesday I set out on the next leg of my journey, traveling by train 2 1/2 hours to Cologne. There I put my luggage at the Hotel Europa am Dom (by the Cathedral), and took the train back to Bonn for the support meeting.
BonnI took a taxi from the train station to the Hotel Zum Wilden Schwein (at the Sign of the Wild Boar). It was a small, quaint hotel on a pedestrian street in a suburb of Bonn, the capital of Germany. I found a comfortable phone booth and made my three business calls, then went to the hotel for the gathering. We were in a room at the back of the tiny pub on the ground level of the tiny hotel. The room quickly filled -- probably thirty or more people. By the end, it was standing room only. (See photos).
Dr. Neumann spoke about his work in Freiburg, and about the history so far of the German support group. He has been coordinating activities from his office. They have had two meetings among the people near Freiburg, the last one at a hotel in the Black Forest owned by one of the members. He closed the hotel to other visitors for the day, and the VHL families took over the hotel and enjoyed the lake, the restaurant, and the mountain air.
This time, the group drew people from all over Germany, Switzerland, and Austria. For many of those present, it was the first time they had met another VHL family. Peter and Sylvine Z. were there from Berlin, and Martin B. and his father were there (we had been together in Hawaii.) One young woman had come from Salzburg, Austria. I had some difficult communicating because of my limited German and the high noise level in the room, but hugs and pictures of our children were easily shared. After about an hour and a half I left with Dr. Neumann to drive to Cologne, but his sister Luitgard stayed with the others, and many of them went to dinner together. Several people arranged to meet with me the following day.
CologneThursday morning I had breakfast with Erika T. and Eugen B. from Switzerland. Eugen speaks English, but Erika is deaf, the result of bilateral ELST. The conversation was somewhat slow, but we were all eager to communicate and we managed nicely. Erika reads lips quite well, but not in English; Eugen relayed my words to her and hers to me. They are a delightful couple, and may even come to Atlanta!
The press conference began at 11 at the Hotel Excelsior Ernst. I was on a panel with several of the doctors from the Hufeland Prize Foundation, presenting Dr. Neumann and his treatise to the press. They were very impressed with the progress he has been able to make in keeping people with VHL healthy over the last 15 years. The previous evening I had spoken with one of his first patients, a woman in her 50's with children and grandchildren. She and her brother both have VHL. She said that previously the people in her family died mysteriously in their 30's of heart disease or stroke or an occasional brain tumor. Dr. Neumann finally diagnosed VHL and worked with them to remove adrenal tumors and screen for problems. She and her brother are now grandparents, and their children and grandchildren are healthy. They are thrilled with the difference his research and care have made in their lives.
I spoke about my own experience in finding my way to Dr. Neumann in the 1980's.
(See Joyce's talk)
After the press conference many of the family members had gathered in the hallway and we all went to lunch at a nearby pub. It's not a "bar" like in the U.S., it's a nice family restaurant with sandwiches and sodas and of course beer and wine. We drank the local "Kolsch" beer (from Koln) and chatted away. It works reasonably well for me to speak simple English and them to speak simple German, with some occasional translation from someone who understood both languages. Ronald M. is interested in psycho-neuro-immunology, and agreed to help me prepare and article for the newsletter. Gerhard A. is willing to be the internet contact for Germany and assist with running the group.
In the late afternoon we went to the hotel Gürzenich zu Köln where the formal presentation was made, complete with a concert pianist playing Gershwin, and several presentations about genetics and ethics. In Germany, as in the U.S., there is great concern about the responsible use of genetic information -- for diagnostics and to be of assistance medically, not as a tool for discrimination.
Afterward at the cocktail hour the families found each other again, and we talked and talked -- we closed up the place, unwilling to say goodbye. But at last it was time for Chris and me to go on to the next event.
The next morning Chris and I drove in her car from Cologne to Antwerp, a little more than two hours over very fine highways.
AntwerpChris and Peter have a delightful little house in Schoten, a village outside Antwerp "with a yacht harbor" as Peter loves to boast with a delightful twinkle in his eye. They renovated a 1906 house into a very efficient modern home, with Chris's eye for architectural renovation and Peter's engineering expertise. Chris said that when Tania visited last September she had called it a "doll's house" -- not unusually small by European standards, but very small for a Canadian.
On Saturday Chris and I went to a pub in Antwerp for the Belgian support meeting. The language of the region is Flemish, which I speak not at all. We had a room in the back of the pub, and about six people joined us there. Chris had chosen a nice place near bus and train stops. Some people spoke a little German or a little French. At one point Chris was conversing with a couple in Flemish at one end of the table, and I was at the other end of the table talking with three siblings. One sister spoke French, the brother spoke English, and the other sister spoke only Flemish. I was speaking French with the sister to my right, English with the brother to my left, and one of them would fill in the other sister in Flemish. This group was interested in DNA testing. Two sisters are clearly affected, and the other siblings have not been tested. Since there is kidney cancer in the family, they are interested in ruling out VHL.
Toward the end of the meeting Adeline and her husband arrived. They are directors of a Guide Dog school in Belgium which Adeline helped to found, and had met with some local officials to secure funding for the school. Adeline is blind and works for the Belgian Association for the Blind. She and I shared ideas about electronic books and transcription services over pizza.
On Sunday, after a delightful breakfast with Chris and Peter, I flew back to the States. It was a very exciting trip. I learned a great deal, met lots of wonderful people, and brought back a treasury of memories. Most of all, I was able to see clearly the contrast between a group of people who have only had good care for VHL for the past two years (in Poland), and a group of people who have had excellent care for the last 15 years (in Germany) and the contrast was striking. More than ever, it demonstrated the power of early diagnosis and appropriate treatment.
Please note: this trip was privately funded. No donations were spent to make this trip. |
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