Today, during our third visit to Texas Neurology, my doctor and I documented my baseline vitals, bloodwork and physical tests, and I learned how to self-inject the ALS trial medication into my belly and gave myself my first shot!
This was the culmination four months of back and forth emails, phone calls, and assessment visits. No lie, I’ve been a bit nervous and anxious about having to self-inject, but in the end it was easier than expected.
After completing more paperwork this morning, the research doctor–Dr. Nasri–assessed my baseline lung and muscle function, the latter feeling more like a boxing match! He then sent me to the lab for bloodwork, where ten vials of blood were extracted. As I walked back in the exam room, Dr. Nasri had a brand new back pack waiting for me, and five boxes of pre-filled syringes for daily self-injection. My heart started beating a little faster.
After reviewing the instructions with Dr. Nasri, it was time to do the deed. The disposable syringe has a pretty short needle and is designed for patients to self-administer, so right away my anxiety was reduced. I lifted my aloha shirt over my belly and went for it, and within a few seconds it was done. No pain or discomfort (or photos of that bare-belly moment!).
While I’ll never know if I’m on the active drug or the placebo, it feels good knowing I have taken the first real step in helping science find a cure for this terrible disease, making this long journey worth it.
Oh yeah, the breakfast after was pretty great too.
Sending continued prayers and love your way.
I’m praying at 6:35 each morning!
Love,
Vicki
That breakfast looks incredible. Glad you are starting the clinical trial already! I see they used a handheld dynamometer for muscle strength testing. Legit!
Glad everything is underway!
You got this José!!!
Hermano…you got this! Much respect for what you are doing. Not only for your benefit…BUT… to help others down the road to help find a cure. Pa’lante Siempre! My money is on you.
I want to wish you the best. I pray for a full recovery! What you are doing here is inspiring and a lesson to us all.
Jose — you are an inspiration! Pretty soon you’ll be doing those injections with ease. And wow, those hash browns look amazing. Keep eating and keep going! Prayers daily for you and your family.
Congrats on kicking ass on taking that shot! Sending all our love from your family in Alaska. You got this ❤️
Hermano, we live our lives wondering at times what God’s master plan is for each of us. I remember the anxiety I felt over 7 years ago hearing those dreadful words – “you have cancer”. Like you, I dedicated my life to staying healthy and fit so I was shocked to learn that my body was failing me now. I now realize that it was all that running and training that prepared me to battle probably one of the biggest challenges in my life. My source of strength was my faith and it grew stronger each and very day of my fight. You got this brother and I am so impressed with your courage and determination. Your story is changing lives daily and that too is part of God’s master plan for you. You are not alone amigo and that is obvious from the outpouring of love you are being shown. I see an award winning book in your future and the chapters have already begun. God Bless. Lou
Aloha, Jose,
I join those who are praying for your return to great health. The fact that you’ve gone to an expert in the disease and are in a clinical trial is all to the good. Keep it up, kiddo!
I had to give myself shots for many years, and it got to the point that it was a routine activity—-even though I’d been a member of the “See A Needle And Faint” club. You “just do it”! I kept my “juice” in the refrigerator, and one day when I was giving myself a shot our daughter, then about 9 or 10, walked into the kitchen and screamed when she saw what I was doing. She said something like, “AAUUUUGGGHHH! Get that horrible needle out of sight!!!!!!” My calm and cool response, “I was here first.” Period. End of screaming. Take it or leave it.
May you keep the same calmness as you progress through your treatment! And may you have the same positive result I did. I wish you good health and continuing positive outlook.
Me ke aloha pumehana, Alice