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.
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.
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.