It’s been a busy few weeks. I had a delightful visit with my sister Gretchen, who flew in from San Francisco to spend a week with Jennifer and me. Gretchen had previously been to Hawaii to visit me back in 2017, and this time instead of visiting as a tourist, she came to help care for me at home and to see firsthand how I was doing. Gretchen is sibling number five of six, and like me, the middle child between our siblings.
One of the highlights of Gretchen’s visit was having her cook some of my favorite Puerto Rican meals I haven’t had in over 40 years. One favorite recipe was a dish my grandmother used to make for me, and it was one of my all-time favorite things to eat. The dish, Arroz Relleno, is made with rice cooked in consommé, Parmesan cheese, and chicken, then topped off with mozzarella cheese. It is a gooey delicious dish.
She also made one of my favorite meals my mother used to make, chicken fricassee, which was equally yummy. Gretchen also made one of my favorite desserts, flan, as well as one of my favorite frozen treats that my grandfather used to make for us.
Gretchen was very helpful in giving Jennifer a break with my care, including getting me to the restroom and helping with bath time. She also spent some time at my office helping me with several personal projects.
Accessing services from home
Earlier this month I also experienced my first blood draw from the comfort of home. My neurologist referred me to a new primary care physician who primarily serves home-bound seniors. This means that I can now access care for routine check-ups and lab work from home.
Health update
This past week, I had my follow-up appointment with my neurologist, Dr. Chin. Because of the progression in my arms, it has become increasingly difficult for me to get in and out of a regular vehicle. So, Jennifer and I decided to try a mobile handicap service, Flash Shuttle Hawaii, which does home pickups with a specialized vehicle that allows my power wheelchair to simply go up a ramp and into the vehicle. It was a great service; they were very friendly and professional and on time, with both the pickup at home and for the return trip home after the appointment.
With Dr. Chin, we reviewed my progression, which has mostly impacted my arms and hands. My left hand is clawed, and my left arm is extremely weak. My movement with my left arm is very limited. My right hand is beginning to show signs of progression, including a significant weakness in my thumb, which limits my ability to pick things up. My right arm is beginning to show signs of weakness as well. Because I’m unable to use my right-hand thumb effectively, I have essentially lost the ability to pick up a pen and write.
I’m also beginning to have some weaknesses around my neck area, which becomes an issue mostly in the morning and at nighttime when it is difficult for me to hold my head up. During the day, when I am less tired and more awake, I’m able to hold up my head without any issues.
We talked through next steps to proceed in getting a feeding tube inserted in my stomach. Planning now ensures that when the time comes that I can no longer swallow food, we have the mechanism in place for me to be fed. We will probably proceed with the surgery sooner than later so that we are prepared when that time does come.
Doctor Chin, who is such a wonderful neurologist and human, ended our appointment by telling me how proud she was of me for the impact I have made on her, her staff, and her colleagues. She noted that she has shared this blog with her colleagues and that they all have provided positive feedback on the work Jennifer and I are doing to advocate for treatments and funding for ALS research, along with our positive outlook regarding our current situation. Though she didn’t mean to, her words made me very emotional, and we both cried together, not in sadness but in the joy of knowing of the impact that we’re making.
Meal support
Jennifer and I want to give a sincere thank you to all of her friends who have volunteered to bring us meals. The meals have been delicious, and the gestures have been very helpful in allowing us to focus on more important things.
If you’d like access to our ianacare community, where we share information on meal requests and other opportunities to help, send a request to join via this link.
Wow way to go Gretchen.
You look good Jose…. Praying for you always.🙏
and of course also for Jennifer🙏🌹 🙏
Thanks for the update.
Love
Melissa
It was a pleasure to meet your sister. Like me, I know family is everything to you. Prayers going to you Jennifer always. Abrazos. BTW…she made you a limber. Brain Freeze LOL. Did you know why they call it a limber? Limber is named after the pilot Charles A. Lindbergh, who landed on the island in 1928. LOL Pat loves them.
Sending love and support buddy!
Gretchen such a Blessing for Jose and Jennifer to have you there. I pray God continues to put His healing hands over you Jose . God Bless you and your beautiful family always!!🙏🏻❤️
It is wonderful to have family & friends to help. They make all the difference ❤️.
Bob Ray & I were taping Pledge Breaks at WEDU this last week, and talked about you. At WMFE, do you remember the night we had Dennis DeYoung (of Styx), & his wife in- studio? You had your hands full, but managed it like the professional you always are. Good times, my friend.
Continued prayers❤️
Carol Barnes
Sending you greetings from Anchorage, where I’m visiting the 2 cutest grandkids (3 weeks and almost 2 years old) in Alaska. Couldn’t agree with you more: family is everything. So glad Gretchen is visiting with you all! <3
Thinking of you and your family and keeping you in my prayers. My parents are also praying for you and send their best. Your strength and positivity continue to inspire. Keep up the great work! 🙏🏻🙏🏻
Jose, you are such an inspiration! Those meals look amazing and I am so happy that you and Jennifer are getting support. Wishing you all the best!
Thats great that Gretchen visited and contributed to your well-being. That’s what family is all about. Your brave, heartfelt updates mean much to all of us. Bless you brother and stay tough.
Jose, i think you’re one of the most inspiring humans ever! I’m happy to see all the great care and food you’re getting. i broke my wrist a month ago and while its been a huge lesson in patience for me to live alone and do everything one-handed, you my friend, help me stay the course. i read about the mountain you’re climbing and am in awe of your Grace. love to you and your family on this Journey!!
Your whole family is pretty inspiring….more Best thoughts & blessings – jc & Gonzalo
Family support is a wonderful gift. Thank you for sharing your sister’s visit, and updates
of your inspirational journey. Blessings, Jean McIntosh
Blessings always to you and your family. Without family, we are nothing! Remember you are loved. If there’s anything you need, just speak and people will help. In Hawaii WE are ALL FAMILY! I love you!!!!!!!!
Jose, love the updates. You and Jennifer are such an inspiration of positivity and perseverance. Continue to fight the good fight! Love and prayers to you!
Send lots of love and prayers to Jose and his entire family 🙏🏼💕
Jose you have been and forever will be #1 my brother. Let’s enjoy our #BOYS this season together. Love ya hermano!!
Jose, I think of you often and glad to find this blog to stay up to date.
Thanks for your sharing and inspiration to us all.
Dear José and Jennifer,
I am sending you love, prayers, and muchísimo cariño from Guatemala. Your continued focus and resolve are an inspiration to me all days. I hope to see you and to be of assistance soon, upon my return. Maybe I will have the courage to make some Guatemalan dishes that I learned!
Sending my love always and proud of your perseverance and positive attitude! 💜
José keeps positive for sure, but Jennifer is amazing and an inspiration too. I watched how she tenderly and patiently guided him, fed him, comforted him, made sure he kept to his schedule, kept meds on a routine. Kept a watchful ear for José 24/7. She’s a rock. I was happy to lend a hand but left knowing my brother was in good hands! She’s a natural! A Huge thank you to his community at work and neighborhood. They too are a wonderful support system. Mahalo & Aloha!🥰
Un abrazo fuerte José!!! Continuamos rezando por tu sanidad! No pierdas las fe
Enviándoles un fuerte abrazo a los dos! Que alegría ver a Gretchen trayendo su alegría y ayuda❤️. El apoyo de la familia es definitivamente una bendición. Siempre en nuestras oraciones🙏🏼!
You are an awesome human being Jose Im joining you in prayers in this fight to defeat ALS. Thank you for being an impact for a better future. We love you my friend!