Japan Part III: Back to Tokyo 3.4.17-3.7.17

After Osaka, we took the bullet train back to Tokyo for more meetings and speeches. This time we stayed in the Asakusa ward. This was old Tokyo of the 1600-1800’s and very different than modern Shinjuku, but still just as crowded. When we got out of the subway, we were quite stunned with the hordes of people. We had two rolling luggage, two duffle bags and eight pounds of See’s chocolates to give as gifts. We had to maneuver around all these people for a half mile to our hotel. It was one heck of a long, sweaty walk! Later in the evening, Brian and I took a walk when the streets were empty. There was an orange glow from the lamps and it looked like we were walking in a movie set. It was very pretty and so different than earlier.

The 6th Annual Japan MS Symposium was in perfect timing with our trip. This is one of George’s biggest events of the year and he added us to the itinerary. Because George was very busy with setting up the conference, he sent Mr. Takeshi Kono to escort us to the event. George is like our uncle, always worried about our well-being and looking out for us the whole time.

The MS Symposium was attended by neurologists, researchers, the MS Friends Association Tokyo Chapter, and staff from Sanyei Corporation. Also, Mr. Ueon and Mr. Kawanishi from Mitsubishi-Tanabe Pharma in Osaka came to the event.

The key note speaker was Dr. Kondo and even though he spoke Japanese, we could follow along because the slides had familiar pictures and data. Sadly, Brian and I are much attuned to reading Gadolinium enhanced lesions, T2 lesions and black holes on an MRI. We know all about JC titers and the chance for Progressive Multifocal Leukoencephalopathy. And we are very familiar about the platform ABC drugs and the other dozen drugs now available to treat MS, plus their side effects.

What was new to us were some of the cutting edge research presented by three recipients of a JMSS Fellowship Award. The researchers talked about biomarkers and a drug discovery that can help with walking. They showed a video of a disabled mouse induced with Experimental Autoimmune Encephalomyelitis (mouse equivalent of MS) dragging his hind legs. They showed a second video of the same mouse, running around, fully recovered after taking the drug. Fingers and toes crossed this can be translated for humans. Well, maybe just my fingers because I can’t move my toes well anymore.

As each presentation went on, the time allotment for Brian and me got shorter and shorter because the other speeches went a bit too long. We worked with our interpreter, Ms. Kazumi Yoshida, to cut our speeches on the fly. That was perfectly fine with me as it was late in the afternoon and I was getting tired.

Translation for this event was different than Osaka. I had to stick to the script. I read one paragraph at a time and paused for Kazumi to translate. I like to make eye contact as I speak and at times I did not follow word for word, and I apologize to Kazumi for not following the exact words! Nevertheless, I felt pretty good about the speech. It helped that Kazumi enacted the same emotion during her translation just as I expressed.

After the speeches, the room divided into 4 groups and George told Brian, Kazumi and me to visit each group for 10 minutes. We spoke with some interesting people, including one lovely lady who is half Japanese and half Spanish. She didn’t speak much English and tried to converse with Brian in Spanish and that comically went nowhere fast! Anyway, we had the marvelous Kazumi to help us converse. This was a fun event for us and I feel like we made a positive statement that it is possible to live a rewarding life despite having MS.

We went to dinner with George and were joined by Mr. Hiroyuki Mitzutani, Chairman JMSS; Mr. Takao Nishigaki, Inspector General JMSS; Dr. Takeshi Tabira, world renowned neurologist; and Mr. Keiichi Tayama, Director Sanyei Corp. It was probably the most entertaining dinner we have enjoyed in a group setting. George again took care of us and made sure we had veggies and even a mini pizza. It was sweet he asked the chef to make foods familiar to us and we also enjoyed a wide variety of Japanese dishes. The comradery shared by the gentlemen around the table reinforces why perhaps the Japanese have long life spans. They work extremely hard, but they socialize and enjoy life at the end of the day. George told us rush hour in Tokyo is 6:00PM-10:00PM because people go to happy hour.

We learned over dinner the Japanese custom of not refusing refills of your drink. It is rude to say no. Potent Sake and Shōchū was flowing, but being Americans, we were allowed to refuse the fourth… or was it the fifth… refill. Whatever we drank, it was enough to finally get Brian to go to karaoke!

George, Keiichi, Brian and I walked to a nearby karaoke house. We rented a private booth and as we rode the elevator to the room, Brian said, “I have no idea what to expect or what to do! This is all new to me!” He was nervous and it was funny!

Before Brian and I could adjust our eyes in the dark karaoke room, George was already belting out “Diana” by Paul Anka! George is a ham and we love him! That set the tone for the rest of the evening. Brian and Keiichi danced as George sang “Oh Carol” by Neil Sedaka. Keiichi crooned like Frank Sinatra, Brian sang Pink Floyd, and I pretended to be Eva Peron. For our finale we all sang Do-Re-Me from Sound of Music. It was a riot! Best night of karaoke ever!

The following morning, George took us to Sanyei Corporation for a meeting that was similar to Mitsubishi-Tanabe. We had green tea in a boardroom with Mr. Ken Kobayashi, President & CEO and had opportunity to speak with his wonderful staff: Keiichi, Ms. Emiko Saito, Ms. Mai Ikeda, Ms. Fuzuki Yuge and Miss Ryoko Tanabe. George brought handouts of all my marathons and this time he told me to only speak for 1 minute about each marathon because Mr. Kobayashi did not have much time. However, I did not feel rushed. Mr. Kobayashi was genuinely interested, asked us questions, and even took photos with us at the end.

That evening we met with George for our first real soba noodle experience. I once bought edamame-flavored soba noodles at Costco and used spaghetti sauce – not exactly the same thing! Later the three of us joined Mr. Takashi Fukutomi and Ms. Akiko Kosugi from MS Friends Association for a concert. I knew it would be a small concert and I was expecting something like the Belly Up in Solana Beach, but this was more intimate. It looked like a Parisian apartment from the late 1800’s was converted into a music room. There was a grand piano, high-tech speaker system, a bar, chandeliers and frilly furniture. It was cozy and glowing with candle lights.  

The headliner was Keiko. She is an accomplished singer and also has Multiple Sclerosis. She arranged this special concert because she knew Brian and I were in town. Keiko negotiated with the venue to keep it a smoke-free concert because George had seen our Osaka hotel reservation requesting a non-smoking room due to allergies. I was amazed by George’s attention to detail and Keiko’s care for my health. Furthermore, the virtuoso pianist turned down another engagement just to come play for Keiko and us.

Keiko is a beautiful lady and sang magnificently. She had a wide repertoire from Michael Jackson to Whitney Huston, plus her own songs. The second act, Rio, came on a couple of times to relieve Keiko. I was captivated by Rio and my one comment was, “Where else in the world can you see a 7 foot Japanese man with long hair sing Edith Piaf songs so beautifully?” To top off the magical evening, Keiko asked for Brian and me to come on stage. The pianist played the Japanese National Anthem and the audience sang to us. Then he started playing The Star Spangled Banner. We took the cue and started singing for the audience. It was the ultimate way to cap off the last night of our vacation.

Actually, we capped of the evening with a good laugh as we walk back to our hotel. George pointed out the Asahi Beer headquarters. He said the locals call it "the shit building” or the "the golden turd." We could certainly see why!

On our last morning, we ate sweet bean-filed pancakes and sakura cookies gifted to us the night before from Takashi and Akiko. George said the freshness date is two days, so we obliged. It was very delicious! We hurried through breakfast to try to get in more sightseeing before our afternoon flight. We visited the Imperial Palace and a couple more museums, and of course, Starbucks. We had to spend the rest of the money on the 24 gift cards we collected for Richard and ourselves. In total, we spent $240 in venti skinny mochas during our two week trip. And it took us two weeks to detox our bodies of caffeine!

We went to the JMSS office for one last good-bye and George and Mr. Yuasa drove us to the airport. George called Mr. Mizutani to let him know we arrived at the airport safely. George handed me his cellphone and I told Mr. Mizutani “Arigato gozaimasu, gozaimasu!” As I spoke, Brian started laughing. Why? Because I was bowing to Mr. Mizutani while talking to him on the cellphone! I think I am ready to move to Japan!

George stayed with us as we checked in for our flight and continued to promote my adventure to the airline agent! Then George walked us to the security line and watched us from behind a glass wall. As we took the escalators down to the gates, we lovingly waved good-bye to George. It was a very sweet moment and I was teary-eyed.

We miss George tremendously and wish we could have stayed longer. It was the best trip ever!

Thank you Hanger Clinic, Challenged Athletes and all of my amazing donors for your support. Your generous donations helped to fund the marathon portion of this incredible journey. Link to marathon review in case you missed it.

Thank you George Nakajima for fundraising for us in Japan. We understand crowdfunding is not common in Japan, but you persisted with pharmaceutical companies and the public to collect 195,000 Yen for this trip. Arigato gozaimasu!

Thank you X-Com Global for powering our entire trip with mobile wi-fi. We were lost a lot and having the reliability of your services helped more than you can imagine.

Thank you Perfect Bar for powering our legs. Peanut Butter Original is our standard pre-marathon meal. We also sustained ourselves with Perfect Bars while sightseeing and running in between meetings and speeches. It was our go-to snack everyday (sometimes twice a day)!

Thank you Running Skirts and BIC bands for the running gear. You two seriously need to break into the women’s running market in Japan. They need running skirts and headbands!

All my love, Cheryl