There are anywhere between 15,000 and 30,000 people living with ALS in the U.S. right now, according to Johns Hopkins Medicine. The Golden West Chapter of the ALS Association, which provides services to Hawaiʻi, says there are hundreds living with the disease in our state.
One of those recently diagnosed is Hawaiʻi Public Radio President and General Manager José Fajardo. He joined The Conversation's Catherine Cruz to talk about his experience and what the future may bring.
Catherine Cruz: Good morning José, thank you so much for being able to come and share your story.
José Fajardo: Absolutely, you know this is not an interview I wanted to give. This is not something that, you know, people want to do. But having the position here at Hawaiʻi Public Radio, and having the megaphone of HPR allows me to have a unique opportunity really to advocate for this disease, for treatment, and for science for ALS.
In the time that I've known you, you're fit, you're athletic, you run, you workout at the gym, and from what I understand you're a pretty darn good soccer player.
Yeah, I've been active all my life. And when I came to Hawaiʻi, I joined Orange Theory Fitness. I was working out three, four times a week, running trails, the 5Ks and 10Ks up the mountains here in Hawaiʻi which I loved. In Orlando, I was playing soccer twice a week and boxing. And I think it was because I was in tune with my body, because I was working out that I was able to notice the very subtle changes that were happening in my body and in my muscles in the fall of 2019. I just started to experience a change in my running gait, my walking gait, I was losing my balance at the gym, which I thought was unusual. I was having these severe cramps and spasms in my legs, mostly in the morning and in the middle of the night.
My primary care physician finally referred me to a neurologist in spring of 2020. And he right away after just doing some minor tests with my legs expressed concerns, and we went right away into a multitude of blood tests and EMGs and MRIs and spinal tap — because as Fred Fisher noted, this is a disease that there is no test for, it's an elimination process — so you eliminate everything and then the only thing that's left is ALS. And in my case, Catherine, I actually tested negative for everything in the summer of 2020 — but it continued to progress into my arms where I was then getting spasms, crampings in my arms and then I started to have twitching which is a clear sign of ALS in your muscles. And I went back for another examination and they did an EMG which is really put little needles in all your muscles, it's a very fascinating test. And that's where they found the first clues that I had ALS, that was at that point, present in my upper limbs and in my lower limbs. So that was March of this year. So from fall of 2019 to March of '21, I was experiencing symptoms until they were able to finally say, "Yes, most likely you have ALS."
And I recall, they were thinking it was something else.
At first, they thought it was paraparesis because the EMGs did not show signs of ALS and paraparesis is the gradual permanent paralysis of your legs. I wasn't experiencing symptoms beyond my lower limbs and the EMGs at that point were negative. So I thought "I have paraparesis. Okay, I can live with that. That's not, that's not fatal. That's not the bad stuff and I could continue to live a fulfilling life." And so when the ALS diagnosis came in, it was a shock to the system. I mean I was prepared because I knew something was not right, but it's a shock because right away the first thing you hear after the prognosis, the diagnosis that you have ALS, is you have two to five years perhaps and start getting your affairs in order. I was like "No, that's not me. I'm going to continue living and doing what I can to advocate for ALS, and living my best life." You know, science is getting really, really good and there's a lot of folks that are living beyond the five years with ALS now. And I'm what's known as a slow progressor — which I hope will continue to, you know, progress slowly so I can live as long as I can.
This diagnosis has changed your life and just hearing Mr. Fisher talk about the research now is robust, and there's so much technology and different trials going on. Talk about your experience and what you're doing.
So right away my wife Jennifer and I went into research mode to see what can we do — so I'm already taking a pill, Riluzole, which I take twice a day which is supposed to slow down the progression. Through Team Gleason, which is a foundation out of New Orleans started off by NFL former player Steve Gleason who developed ALS — still living with ALS — they set up this foundation to help pay for some technology, including voice banking which I was able to do, which is your ability to record about 50 sentences. From that, they're able to computerize your own voice for future use. And then I also started looking into this platform trial called the Healey Platform Trial, which is really a unique methodology of taking four or five treatments at the same time and exploring that with ALS patients around the country. And as Fred mentioned, I have to fly to Dallas for that treatment. But the benefit of that is that you're sharing placebos with four other groups, so you have a 75% chance of getting the active drug instead of the 50% chance in typical trials. So I started that treatment, it's a daily self-administered shot in my belly, which sounds terrible, but it's actually been pretty easy. And I'm doing it not just for the possibility that it could help me personally, but also the fact that it's going to advance science whether I have the placebo or not. And that's I think, ultimately, more important.
You talked about voice banking, so let's step back a little bit because I just happened to be passing by your office, and you said, "Hey, Catherine, come in here." You were showing me what this does, I guess in the event that you lose your voice.
It has not yet impacted my voice or swallowing abilities, but that is a possibility. So voice banking — I recorded the 50 sentences. And then if I lose my voice, I can use a computer to type in sentences and it will say what I'm saying with my voice, but a computerized voice. And if I lose my ability to use my arms and hands, which my arms and hands are now weaker than they were a few months ago — I can use my eyes, it's called eye-gazing technology where my eyeballs will scan a computer screen and type out what I want to say. So at least my wife and my children and my grandkids will still be able to hear me and my voice — and my voice is my it's my logo, right?
You talked about the trials that you're involved in. I imagine a shot a day is something you've got to kind of fortify yourself if you're shot-hesitant.
Yeah, but it's fine. It is what I have to do. And it's important for me to participate in the trial, not just for me, but for the population of ALS and the future generations of ALS. Because science is getting really, really close, I think, to finding a cure, maybe not a cure, but a way to help slow down the progression or stop the progression. If people want to learn more, they can go to als.org. My story is on my own web page called teamjose.com because it's all about learning and understanding the disease. And if someone can say I now know somebody that has ALS, because they know me, then that will maybe provide them the impetus to go learn more about the disease, advocate for it, perhaps contribute to help find a cure for ALS. I'm very optimistic, and you know me, the audience knows me, I'm a very positive person. I'm optimistic that there will be a cure, maybe not in my lifetime, but in the next lifetime for sure.
Click here for more information on the virtual “Walk to Defeat ALS." To participate as part of Team HPR, click here. This interview aired on The Conversation on Oct. 20, 2021. Sophia McCullough adapted this interview for the web.
