The Walk to Defeat ALS took place in Honolulu this past weekend. It's an annual fundraising event to raise awareness about the neurodegenerative disease for which there is no cure. Every year some 6,000 people are diagnosed with Lou Gehrig’s disease, or amyotrophic lateral sclerosis.
José A. Fajardo, Hawaiʻi Public Radio president and general manager, has been sharing his story with family, friends and colleagues. The Conversation sat down with him last week to get an update.
He was diagnosed with ALS just before the pandemic hit. Within the last three months, he lost use of his arms and hands. He is still hard at work at the station but is candid about the realities of dealing with ALS daily.
Interview Highlights
On the progression of his ALS
I'm unable to walk now. I am in a power wheelchair full time. I've lost the ability of both my arms and both of my hands. So I can't type. I can't grab anything. So I am 100% now dependent on my wife Jennifer as my caregiver for everything from dressing to feeding, bathing, toiletry, you know, using the bathroom, all those things. Also, I'm beginning to have as you can tell, a little bit of deterioration of my voice. My breathing is a little bit more, it takes a little bit more effort for me to breathe. So I have a breathing machine in my office, and I'm getting one that I'll be able to move back and forth from home to office. My energy level tends to wane because everything is an effort for me... and then, you know, our listeners can't see, but in front of me, I have my high-tech machine which allows me to communicate when, if ever I do lose my voice, or I can use it as my desktop. The device allows me to use my pupils to navigate my desktop and to type out messages.
On continuing to lead Hawaiʻi Public Radio
We have a passion for the work that we do. And I still have that fire in me to come into the office and work with our team to advance our mission. And our listeners might remember that I used to be on the air an awful lot during our membership campaigns during Morning Edition, All Things Considered, and now they might only hear me once or twice, here and there because my voice, I just can't maintain my voice quality like I used to, or my energy level — just takes an impact when we do the membership campaigns.
On staying in tune with your body
People should educate themselves because the symptoms are very different when it starts with someone, and not to scare, you know, the population, but if you start to experience a twitching of your muscles or cramping of your muscles in your arms or legs, you feel a little wobbly, or you feel like you don't have the balance that you used to have, go see your neurologists right away and just do a physical examination because with a physical examination, they can at least know that maybe there's something there that needs to be further explored. So the sooner you know, the sooner you can get on the limited drugs that are currently available for ALS patients.
On the future
I'm a very optimistic person. I haven't let this disease define me. I don't sit in the corner, you know, depressed. I still enjoy life. I enjoy my work. I enjoy my colleagues. I enjoy my family. And so while I am not able to do all the things that I used to be able to do, those things that I still can do, I enjoy as much as possible because I don't know what my sunset timeline is — it could be three months, it could be three years. But as long as my mind still works, I still have a passion for the work I do with the support that I have with the board and the staff, I'll continue to come in and, you know, lead this outstanding team that we have at Hawaiʻi Public Radio.
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Past interviews on The Conversation with José A. Fajardo in October 2021 | September 2022
This interview aired on The Conversation on Oct. 4, 2023. The Conversation airs weekdays at 11 a.m. on HPR-1. Sophia McCullough adapted this interview for the web.
