Neuronata-R Visit 3 Experience

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For the third trip we did not have to make another wire transfer as the actual bill for the second visit ended up being less than the amount we had transferred, so we ended up with a sizable credit to put towards our third visit. I was blessed to be accompanied on this one by two of my best friends from Michigan, who volunteered time away from their families and jobs to support me on the final leg of this treatment cycle. I know that most (or more accurately all) of what people hear about fraternities in the news is negative, but what never makes headlines are stories like this. We met 25 years ago in college as freshmen pledging together, and over the years we've been through weddings, kids, vacations, and milestones both good and bad. Since being diagnosed with ALS, our visits have become more frequent and they never fail to knock a few items off our household to-do list every time they visit. We would never have become the friends we are if it weren't for our fraternal experience, and I am so grateful that they and my other brothers are a part of my life.   

Bill and Jason met my dad and me in Hamilton, Ontario, Canada and they took me the rest of the way to the Toronto airport. We flew out on January 13th, 2019 and arrived on the 14th after a direct flight to Seoul. On this flight we purchased Premium Economy seats, which were wider and had more legroom than than regular Economy. Although the lay-flat seats in first class are amazing, I think I preferred these seats more as it was easier to talk with my friends and get help from them with meals, adjusting headphones and using the entertainment system. 

The evening we arrived in Seoul we met with a new friend I had made through this website, and he invited us to dinner. Although I'd never say I'm blessed to have ALS, I can say I'm blessed to be part of the ALS community. Through this website and Facebook I have connected with people around the world who are battling ALS. What I have found and appreciate is that, universally, all the things that typically divide us, be it race, religion, politics, or language, all become irrelevant when people are facing this disease together. My new friend is just starting his battle, and I was fortunately able to help him and his associate gather information about this treatment. It was a great meal with old friends and new friends, and early the next morning we got up early for the hospital–arranged taxi to take us to the clinic.  

Day 1

We checked in and then had breakfast at the restaurant at the base of the hospital. The meal that the three of us got was so tasty that Bill and Jason got it the next two mornings (although on day 3 it had quite a bit more kick). I completed the usual tests again; chest x-rays and EKG, in preparation for the CSF withdrawal scheduled for that afternoon. The procedure went smoothly as the doctor was able to pull at the first injection site. After another 6 hours on my back, and several TV shows later (using a Roku stick connected to the room TV and the hospital WiFi), Jason walked down the hill to the Stay Seoul Residence hotel while Bill stayed with me in the room.  

Day 2

The next day brought a unique opportunity that the nurse coordinator at the clinic had asked me to participate in a few weeks prior. The Korean broadcasting company MBC requested an interview with a foreign patient undergoing this stem cell treatment for a documentary news segment and I was happy to oblige. Through an interpreter I was asked many questions about my ALS, the procedure, and how I came to seek treatment in Korea. I offered to let them film the Neuronata-R injection itself, which they did, and even Bill and Jason were asked a few questions. It should air in early March and I'll add a link when it becomes available. Of course I wore my NeufStrong T-shirt! Even under the camera and in front of a small audience my doctor was able to inject at the first site on my challenging spine. The same vibration vest protocol was followed as after my first injection during visit 2 and I started taking acetaminophen as soon as I started to feel a fever coming on a few hours later. This kept me much more comfortable and I took it twice more before discharge the next day. Jason stayed in the room that night and in the morning we said our goodbyes to the team. It was odd not knowing when I would be back, as this experience has brought us close together and I will miss them.  

We had the balance of that day and most of the next to do some sightseeing. After taking the hospital van to the hotel (where we left our bags as it was too early for check-in) we took a taxi to Gyeongbokgung Palace. Although the Best Western Hotel Kukdo doesn't have the most interesting immediate surroundings, it is centrally located if you are taking taxi rides to most of the more popular attractions in Seoul. This palace was not as easy to navigate in a wheelchair as Changdeokgung Palace due to the large blocks that made up the courtyard floor surrounding the main building. We went to the National Palace Museum of Korea right on the palace grounds to warm up. Later that day we went to the N Seoul Tower, where we took a wheelchair accessible tram up to the top of the mini-mountain on which the tower is built and then watched the sunset from the observation level of the tower itself. The tower is right in the center of Seoul, and it was fascinating seeing the lights of one of the most populated metropolitan areas in the world come alive with a 360-degree view. 

The next day we did some souvenir shopping in the Insadong neighborhood, had Korean Barbecue for lunch there, and then went over to the National Museum of Korean Contemporary History. I found this museum to be the most interesting to me, highlighting Korea's 20th century struggle for independence, the destructive Korean War, and then South Korea's amazing economic growth. We flew home later that day on an uneventful flight, wrapping up this treatment cycle and adventure.