What If You Have a Devastating Diagnosis? Keep Positive, Says This Lou Gehrig’s Disease Champion
Key takeaways:
José Fajardo has amyotrophic lateral sclerosis — commonly referred to as ALS or Lou Gehrig’s disease.
He knows he is living with a fatal disease affecting nerve cells in his brain and spinal cord.
His positive attitude keeps him going, and he has encouraging tips for others dealing with the same condition.
José Fajardo can’t walk, eat, bathe, or even use the bathroom without help. He’s been ravaged by amyotrophic lateral sclerosis — commonly referred to as ALS or Lou Gehrig’s disease. It’s a progressive neurodegenerative condition affecting nerve cells in the brain and spinal cord.
“I'm a prisoner of my body at this point,” José says.
Yet, he continues his duties as president and general manager of Hawaii Public Radio.
“I still love my job,” says the 59-year-old Honolulu resident. “I have the full support of my board and my team. My board has made accommodations here at the workplace. My team is extremely helpful. And because I don’t build widgets, you know, I’m a thought leader. I’m a leader of the company. I roll into the office, and I’m able to still have meetings with my team and still able to strategize with the board and the team on how to continue to advance public radio.”
José, who played competitive soccer, practiced yoga, boxed for exercise, ran mountain trails, and biked long distances before his diagnosis, knows he is living with a fatal disease.
“While it is fatal, if you accept that ultimate ending on day one, then your progression is going to be a lot faster,” he says. “Studies have shown that if you maintain a positive attitude, then you're able to have a little bit of a longer lifespan, because being positive does so many wonderful things to your brain, to your body, to your heart, and to your soul.”
With that in mind, José has tips for those facing an ALS diagnosis.
1. Do your research and connect with ALS resources
For José, doctors initially ruled out ALS based on a round of head-to-toe testing they conducted after he noticed differences in his running and walking gait, along with loss of balance.
But his condition grew worse.
“I live very close to work,” he says. “I would sometimes walk to work like I was drunk. And I would sometimes walk like I was Frankenstein — my legs would be really, really, stiff.”
After diagnosis, the first thing he realized — and the first tip he would give — was he needed to research.
“There's so much information out there regarding ALS, and it can be very overwhelming,” he says. “I was lucky because my wife, Jennifer, is very much into doing research, and she became our lead person to find out what we need to do.”
They started locally.
“Right away, we connected with the local ALS chapter, who really provided a lot of important resources to us and access to their loan closet, in case we needed any equipment,” he says.
Nationally, they found valuable financial information, among other help, at the national ALS office.
“If you have a disability and you apply for Social Security disability, typically you have to wait 5 months,” José says. “As an ALS patient, you qualify for social security disability on day one. There's other benefits out there with shortcuts for people who have ALS.”
José also cited Team Gleason, started by former New Orleans Saints football player Steve Gleason, who was diagnosed with ALS in 2011, for help with grants to secure wheelchairs or afford voice banking.
Also, a company called Synapticure, founded by ALS advocate Brian Wallach, who also founded I am ALS, helps patients locate top-notch neurologists from around the country. The company also uses genetic testing to help families understand the chances of ALS getting passed on to their children. What’s more, it registers DNA biomarkers and alerts people should treatments become available for that particular gene structure.
2. Stay positive
José, a father of three grown children and grandfather of two, chooses to avoid some online support groups because they are “doom and gloom.”
José and Jennifer started TeamJosé.com shortly after his diagnosis. He also took advantage of his access to the radio waves to talk about his journey.
“A lot of people have asked me what my legacy is going to be,” he says. “Yeah, I've had a terrific career in radio. My legacy will be my kids or my grandkids. But now, my legacy will also be how I stood for positivity and advocated for the ALS community in so many ways.”
He says his positive attitude is contagious.
“The doctors who I visit are always impressed that I walk in with a smile on my face,” he says. “And when I leave, they have a smile on their face.”
3. Stay busy
José refuses to do nothing.
“We’ve learned some people who get the diagnosis of ALS have become invisible because they get depressed,” José says. “They lose motivation to go do things. We decided we weren’t going to do that, that we were going to continue to live our lives as much as possible the way we have been living our lives.”
José is the second of six siblings born to Puerto Rican parents. His dad, a military officer in the U.S. Army, was on tour in Vietnam during one of his son’s early birthdays and mailed him a cassette recorder. He later forwarded a 45 record. The gifts launched an interest in radio.
“While my brothers were playing army, I was playing DJ,” he says.
That’s why he feels so fortunate to have a job he can perform while living with ALS. Since joining Hawaii Public Radio in 2016, he’s implemented programming changes, reformatted and rebranded stations, increased the size of the local news team, and grown membership numbers, revenues and audience sizes. The endowment has grown by $4 million and the rainy day-fund by $2.5 million.
“This is the job I’ve always wanted to do and love,” he says. “So, this gives me great purpose … This keeps me alert, keeps me motivated, and keeps me happy, as well.”
4. Participate in medical trials
While José was able to start on Relyvrio, one of the few medications approved to treat ALS symptoms, he wanted more.
He learned of trials at the Massachusetts General Hospital’s Healey Center for ALS and started applying. The center runs trials at sites throughout the country and José was willing to visit Dallas regularly to participate.
“You have to be your biggest advocate,” he says. “It was like applying for colleges because they don’t come to you and say, ‘Hey, be a part of this trial.’ You have to get yourself in front of them.”
Even though his participation has not yet yielded success, he will keep trying.
“The way I view it is, by participating in a medical trial, I’m helping science,” he says. “I was helping science in the ALS community, whether the drug worked or not. If it worked, then great, and if it doesn’t work, then it allows the ALS science community to go to the next track.”
5. Prepare for the future
While José has lost most use of his legs and his arms, he still can eat, swallow, and talk. But he knows a day may come when he cannot.
“Start banking your voice immediately,” he says.
By storing your voice in the “cloud,” it becomes available and can be used via a special device if you lose the ability to speak, he says.
The next step: technology that allows communication via reading with the eyes, he says.
He adds that those PALS — Persons with ALS — who can still walk might eventually need a wheelchair and obtaining one now is smart.
José’s even been proactive about inserting a feeding tube into his stomach.
“Being proactive about getting a Hoyer Lift, being proactive and modifying your bathroom — you can’t kick these cans down the road,” he says. “Your progression can be slow, then all of the sudden, it can be really, really fast. Every progression is completely different.”
6. Build your support community
José’s wife, Jennifer, is obviously his biggest supporter. They were still newlyweds when José was diagnosed.
She’s helped him build a network of support. With the ianacare app, friends and family members can help with things such as transportation, attending appointments with José, or preparing meals.
They’ve also established a group of “lunch buddies” at work.
“I can’t feed myself anymore because I’ve lost the ability of my hands and arms,” he says. “Sometimes, they bring lunch. Sometimes, I provide lunch, and they feed me, and it's a very intimate experience. It’s a very vulnerable experience. But it’s been also a great opportunity just to have a friend in my office to share a meal and to talk.”
José says the support network should include support for caregivers such as Jennifer.
“It can be a very lonely place to be a caregiver,” he says. “My wife is my hero.
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