The week after we returned from our trip to Denver, I had the pleasure of hosting my younger brother, Tuly, here in Hawai‘i. Tuly flew all the way from San Juan, Puerto Rico to spend a couple of weeks with me and Jennifer, in order to see firsthand how I was doing and to experience some of my every day challenges.
Nobody makes me laugh as much as my brother Tuly does. While we had lots of laughs and chats about growing up together, we also spent a lot of time reflecting on my realities regarding my diagnosis of ALS. Tuly jumped right in and was extremely helpful. He helped me with bath time, dinner, putting me to bed, and massaging my legs when I would have cramps and spasms.
During his visit, Jennifer and I introduced Tuly to a variety of our favorite foods in Hawai‘i, among them: pho, (by far his favorite), ramen, poke, (his least favorite), dim sum, and Korean barbecue. On the sweet side, he was able to try out and enjoy poi donuts and shave ice. We also got to enjoy a spectacular sunset while having dinner with Jen’s parents at the Elk’s Lodge in Waikiki.
Since shaving is something that’s become harder for me to do for myself, Tuly also treated me to a shave and haircut at Premier Barbershop in Ala Moana Shopping Center, which is walking (+ rolling!) distance from our apartment.
The Fajardo boys have always had a tradition of playing the board game RISK since we were in high school. Every time we get together, we always have to play a game. I am the reigning Fajardo risk champion, and Tuly has never been able to beat me. Of course, we were able to squeeze in a game the night before he left, and while he definitely had a chance to beat me, I prevailed and once again defended my RISK crown.
During Tuly’s visit, we also got to spend some quality time with some old high school friends. We were able to see Carlos Betancourt and his band perform at the Waikiki Yacht Club. A few days later, we were able to spend some time with Stuart Moore who is a pilot with Delta and just happened to have a layover in Honolulu. Both Carlos and Stuart attended Antilles high school with Tuly and me. Spending time with Carlos and Stuart while Tuly was in town was an unexpected bonus and delight.
After Tuly left for Puerto Rico, my next visit was with my neurologist Dr. Vivian Chin, who I see every three months to check in on my progression and to discuss ongoing treatments and options. Dr. Chin is such a loving and caring doctor, and has been providing me with both expert and thoughtful caring treatments. We discussed adding TUDCA to my daily intake of meds. TUDCA combed with sodium phenylbutyrate (AMX0035) has shown promise as a treatment for ALS.
We also talked about the possibility in the near future of having a feeding tube placed outside of my stomach in the event I lose my ability to swallow. Right now my swallowing has not been impacted, but these are the things we have to start thinking about and planning for now. We also discussed adding physical therapy home visits to help with my stretching and exercises in to help me maintain range of motion in my limbs and also mitigate some of my aches and pains.
And finally, we had a visit from Frank of National Mobility & Seating, who was returning my power wheelchair after a loose cable shut down my power wheelchair a few days after receiving it. I am now getting more comfortable using my power wheelchair, and I am enjoying a greater sense of independence with its use.
As you can see, it’s been a busy few weeks and we have even more to share, so expect another update later this week!
Maria ( Meléndez) Davila
I’m so happy you got to spend some quality time with Tuly. I will continue to keep you in my prayers and May God continue to give you the strength to battle this disease, you are truly Amazing!!! God Bless you always 🙏🏻
I stayed at the Royal Kuhio which is down the street from that shopping center many years ago. I’m glad you had a chance to spend time with family. I know first had how indespensable a power chair is. God be with you both. Thank you for the update!!! 💗🙂
Glad you got to spend time with your brother and with Carlos. Puerto Rico in da’house. See you back at Kaheka. Pa’lante Hermano!
You are such an inspiration to others. TEAM FAJARDO!! Glad you had a nice visit with Tuly. Always in my prayers and heart♥️. Love you!!!
Thank you so much for being willing to share your ALS journey, Jose. I’ve known people with ALS and it has always been difficult to be able to even come close to putting myself in their shoes and so be able help. Sending suerte, fuerza y mucho cariño to you and Jennifer.
So wonderful you had family and friend time together. I love that your brother tried the Hawaiian and Asian delicacies! Imua!
No SPAM sushi for Tuly! 🤣. It’s quite a site to see the big brother with the little brother, thank you for sharing. Many thoughts and prayers going your way.
Marie Claire Seoane
You are in my prayers and in several churches prayers. I lost your address and have a rosary a priest gave me for you. Messaged you but didn’t answer me. Pirate brother God Bless you.
Connie B. Williamson
That is wonderful Tuly came to visit you. I love love all the pictures. That is funny about the game Risk. That is so cool you spent time with High School friends! Praying for you and Jennifer. Connie Balderrama Williamson
Nothing like family time; terrrrrific!
Ana L. Neris
We can feel the brotherly love! What an AWESOME visit! Also so glad you all got to spend time together with Stu and Carlitos. You and Jennifer are always in our prayers. Sending our love and support.
Ana and Fred Neris
SO GLAD you had quality time with tuly (and love the throwback picture with your glorious mane of hair)! looks like haircut and a shave is an indulgence you enjoyed and deserve!
feeding tube- i know a bit more than i should (#life)- and while you have brilliant advisors, etc.; don’t hesitate to ask me if anything comes up.
i can make zoomie movies of you in the new chair… !!!