Chris was back in Boston at the end of last month for a follow-up appointment with his doctor at MGH and to start a clinical trial. Below he shares some commentary on his busy two days in Massachusetts: [...]
Hello again! In early February, Chris, Ann, and Cameron Boltes traveled back to South Korea for Chris’s second stem cell treatment with Dr. Kim. Cameron graciously shared his notes on their trip:
We arrived in Seoul on Sunday morning after a long flight filled with some new challenges that were expected, but still difficult to deal with in the moment. Sunday was a “rest day” and much needed after a long day of travel. Everywhere we went, people were in “lockdown” mode for the Coronavirus. They scanned everybody’s temperature with a thermal scanner when you walked in and out of public places and 95% of people were wearing masks, us included. Monday we were up early and had a wonderful breakfast in the hotel and then got packed and prepared for the hospital. We arrived at the hospital in the afternoon and were smoothly transitioned into the clinic for treatments. The hospitals there have a very different feel than hospitals here - very few nurses and a much more private experience. All of the procedures are done in your room and they rely on the patient’s family to provide routine help that would typically be done by nurses in the states.
The procedure is done in two parts, first they extract roughly 30ccs of spinal cord fluid through a tap in the lower back. This process is painful but bearable. The extraction takes about a half hour followed by 6 hours of rest flat on your back. Chris managed this well and by the time the 6 hours was up, he was ready to eat a bite and head to bed. The next day, early afternoon, they started the second portion of the procedure, which involves mixing your stem cells with the spinal fluid that had been extracted the day before and then reinjecting them back into your spine. This process is extremely painful and the 6 hour “rest period” on you back that follows isn’t fun either. That night was probably the most difficult of the trip with high levels of pain. At some points we were just trying to make it 15 minutes at a time. After surviving the night with pretty intense pain in back, head and thighs, we were released the following day around lunch time.
We headed back to the hotel to recover over the next two days. It was a difficult couple days in the hotel with intense pain and general discomfort that made it hard to sleep or get adequate rest. On the second day back, we decided to bust loose and go for a little walk around downtown Seoul. Chris and I were two of the biggest guys in the entire city and with me pushing him around on a borrowed wheelchair that was two sizes too small, we stuck out like sore thumbs. But it was a highlight and great to get out and about for a couple hours. It was 22 degrees on our excursion and the cold caught us off guard. Thankfully, we stumbled across a little shop selling fur lined camo hats with earflaps that were just what the doctor ordered. If we didn’t stick out before, we certainly did now! The wheelchair survived the expedition, barely, and we even managed to make it back to the hotel with hot Korean donuts! [...]
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A Note from Chris
Chris is so grateful for the check-ins and notes he is receiving and reading your correspondence is one of his favorite things to do. Unfortunately, his mobility and dexterity make it challenging to respond the way he would like and his various daily therapies leave him pretty wiped out. His “new job” of combatting ALS includes PT, OT, acupuncture, therapeutic massage, physical training, nutritional counseling, as well as appointments with several different medical doctors, all working as part of “Team Chris.”
These Journal entries will help to keep everyone informed and preserve Chris’s time and energy.[...]