About

My ALS Journey

Until my diagnosis, I had only known one person who had ALS and, like most Americans, knew of two famous people with the disease, Lou Gering and Stephen Hawking. That’s it. I didn’t know much about ALS, and it wasn’t on my radar. All that began to change in the fall of 2019.

I’ve generally been a pretty healthy guy. My kids thought I was from another planet since I rarely got sick. I’ve always led a pretty active lifestyle. I ran track and played soccer in high school, participated in Little League baseball, and later played in recreational softball flag football leagues as an adult. I played in an adult co-ed soccer league until I was 52, had a boxing routine, and biked an average of 20 miles on weekends.

Upon my arrival in Hawai‘i, I joined the local Orange Theory Fitness gym (which I loved!) and started to run in competitive mountain trail runs. I was in the best shape I’ve ever been in my life.

Sometime around October/November of 2019, I started to experience intense leg cramps and spasms, mostly at night, and a significant change in my walk and running gait. One of the advantages of working out and being healthy is developing a deep understanding of your body. My physician thought I was simply over-exerting myself and recommended I take some time off from my exercise routine.

I did, but deep inside, I knew something was different.

As 2020 rolled in, my cramps, spasms, and the change in my gait continued to increase. My balance was beginning to be affected, too. By the end of February 2020, I finally received a referral to see a neurologist. My first appointment was in late April, just as Covid-19 began to engulf our world and Hawai‘i began to shut down.

At my first appointment, the neurologist immediately expressed concerns after some basic physical tests. He ordered blood work and a couple of MRIs to start eliminating possible issues.

During the start of COVID in March and April, when OTF was closed, I ran outdoors about 3 miles a day. A few days after my first neurologist appointment, I had a pretty bad fall while running. I tripped on my dragging feet and busted my knee and head on the cement sidewalk. I was still in denial and blamed the sidewalk. After a few weeks of recovery, I went out for another run, and when my feet began to drag again, I stopped, walked home, and have never run again. My last run was on May 20, 2020.

As my initial blood tests and MRIs results began coming back with normal results, my neurologist expanded the list of possible issues, and more blood tests were ordered. As those came back negative, a spinal tap and my first EMG were both ordered. By the middle of summer, every test was negative, and every disease and issue on the long list of possibilities was eliminated. Because there wasn’t anything else left on the list, the diagnosis was paraparesis – the gradual slow paralysis of the legs. In truth, I was happy with the diagnosis, given all the bad stuff that was eliminated.

Over the next few months, life went on. I had an indoor bike and rower and maintained most of my workout routines, except for running. Gradually, though, the symptoms I only experienced in my legs migrated to my arms, and suddenly, I started to experience twitching in my legs and arms. I thought it was curious and didn’t pay much attention to it, and my neurologist at the time didn’t think anything of it either.

During a routine visit and right before a routine “second opinion” appointment with another neurologist, a colleague of my first neurologist reviewed my records and thought something wasn’t right. On the spot, he asked if he could perform a quick EMG of my arms. We were bantering with each other because he’s a Pittsburgh Steelers fan, and I’m a Dallas Cowboy fan, but in the middle of the jokes and the EMG, he got silent, and his eyes went wide.

As he wrapped up the EMG, the words “possible ALS” came out of his mouth. I was stunned, and he offered to conduct an EMG of my legs within the next few days. That test result also hinted at possible ALS, now in my lower and upper limbs. This was March 2021.

After seeing those results, my “second opinion” neurologist quickly transferred me to a colleague who had more experience with ALS, and another full-body EMG was ordered. The results were the same, and my diagnosis officially shifted from paraparesis to “possible to probable ALS” in May 2021.

My life was changed forever.

My life story

I was born at Fort Brooks Army Hospital in San Juan, Puerto Rico, the second child of Wallace and Ileana Fajardo. Eventually, our family would grow to six siblings, three boys (Wally, me, and Tuly) and three sisters (Ily, Gretchen, and Kika).

My father served as an officer in the U.S. Army, with tours in South Carolina, Frankfurt, Fort Benning, and Fort Polk. Most of our time was spent in Fort Buchanan, Puerto Rico. Dad also spent two tours in Vietnam and tours in Korea. While Dad never spoke openly about his time in Vietnam, as he entered his final stages of life we learned that he was a war hero. With just a pistol in hand, he single-handed halted the progression of a line of enemy tanks saving the lives of many soldiers under his command.

As the middle son, I was the typical “middle child,” kind of always below the radar, and that was okay with me. With an older and younger brother, there was never a dull moment. We made up games, spent most of our time outside, and had incredible adventures.

I always had a fondness for broadcasting, falling in love with radio at a very young age. For my seventh birthday, my father gave me a cassette player, and later, for my tenth birthday, my very first record player.

I would spend some of my days playing radio DJ. I only had two records at the time, The Carpenters and Jose Feliciano. I would record myself introducing a cut from the album and then record the song into my cassette recorder while holding the microphone. By the way, during one of these “play” sessions, I had a near-death experience.

I was alone in my room (which I shared with my two brothers) eating a hotdog while recording “my show.” A bite from the hotdog got stuck in my throat, and I began to choke. In my struggle to dislodge the hotdog, I fell back in my chair. The force of hitting the floor dislodged the rogue piece of meat. I never told my parents and only told my family later in life. As a very young “radio” professional, I knew “my show” had to go on.

Later, at the age of 12, I was in sleeping in the top bunk listening to the only English language AM radio station, at the time, in Puerto Rico, 940 AM. I went to bed with an AM transistor radio listening to the nighttime DJ when he played Elton John’s “Someone saved my life tonight.” I don’t know if it was the song, the DJ, or just the warm sound of AM radio, but it was at the moment that I knew I wanted to be on the radio. I remember that night like it was yesterday. From that moment, I focused on doing everything I could to prepare myself for a career in radio.

At 15, with the help of Carlos “Chubby” Reyes, I launched the Teen Club dances at Fort Buchanan, DJ’ing the dances every other week with a growing collection of 45 rpm records. I got paid $20 per dance. It was so much fun, and to this day, alumni from Ft. Buchanan still remember me playing the first slow song they danced to on that dimly lit dance floor.

I graduated from Antilles High School, a Department of Defense school located in Ft. Buchanan, in 1981. I attended school there from the second half of first grade through 12th grade–except for the second half of 7th, all of 8th, and the first half of 9th, when my dad did a quick tour first at Staff Army College in Norfolk, Virginia, and then at Ft. Polk, Louisiana. My graduating class had fewer than 80 seniors. I played soccer (even made the all-island team my senior year) and wrote for The Pirate Pages, the high school newspaper.

I had several of my mushy love poems published in the school literary journal, The Patch, under the pseudonym Twelve. I was such a romantic.

After high school, I went to the University of Central Florida in Orlando, Florida. At the time, UCF’s FM radio station was reserved for advanced students in broadcasting. As a lowly freshman, I discovered they had a low-power AM station used as a lab. You could book it for an hour or two and practice cueing up records and forward/back announcing songs. I would go in late at night, even though I wasn’t in a radio class at the time, and hosted my little show, which I’m sure was heard by no one.

I also wrote for the UCF newspaper, The Future, covering women’s and men’s soccer, baseball, and wrestling. At the time, UCF’s women’s soccer was ranked in the top five in the country, and I was fortunate to travel with the team to cover some of their tournaments outside of Orlando, including a weekend tournament at UNC Chapel Hill. I also covered the first national NCAA champion hosted by UCF, the 1982 women’s soccer championship tournament hosted at the intramural fields that no longer exist.

While I enjoyed my time at UCF, I partied more than I studied. After my third semester at UCF, I was not “invited” back.

I almost joined the Army, but during Christmas break with my family, who was station at Ft. Lee, Virginia, a friend told me about a small college in Killeen, Texas, that had its own TV and radio station. Instead of telling my dad that I had basically flunked out of college, I told him I was “transferring” to Central Texas College. A decision that changed my life forever.

With $500 in my pocket, I boarded and rode a Grey Hound bus from Ft. Lee, Virginia, all the way to Killeen, Texas. I was dropped off in downtown Killeen at almost midnight in the shadiest part of town. I almost chased the bus down, wanting to get out of this place. Instead, I ate a hotdog at a Wienerschnitzel stand and waited for an Antilles High School alumni who I didn’t know (except that he dated my sister), to pick me up. He was renting a duplex on Janis Drive and worked at Taco Bell. That came in handy since I had no job and no money after paying for my first semester and lived off his free Taco Bell food. An occasional taco or burrito was also provided by one of his work colleagues, who later became one of my best friends and fellow broadcasters, Brodie Bashaw, now GM at the Waco, Texas NPR station.

Our apartment was six miles away from CTC and I didn’t have a car, so I purchased a 10-speed bike that I rode on US Highway 190 back and forth every Monday and Wednesday, and twice on Tuesday and Thursdays when I had class in the morning and evening. I made this commute faithfully every week for my first semester at CTC. Mid-semester, I was hit by a car just as I approached the entry ramp as the sun was setting. I was lucky there was no traffic coming from the other direction; otherwise, I would not be writing this narrative. I told the older gentleman who hit me that I only wanted my bike and glasses fixed and a ride to class since I didn’t want to miss class. With a bruised leg and no glasses, I arrived at class on time.

That April (1983), I applied for one of the coveted student jobs at KNCT-FM. I was lucky to be hired by my first broadcast mentor, Max Rudolph, the radio instructor for most of my classes at CTC. I hosted the 6 p.m. to midnight classical music shift and was later offered the prestigious Friday night shift of Golden Review, a 50s, 60s, and early 70s classic rock show. I worked at KNCT-FM for a year until my graduation in 1984.

During my time at CTC, I also had the wonderful experience of directing and producing a couple of student-run TV programs. I also hosted a high school football pregame show, using the alias David Anthony, and had the fantastic opportunity to be the co-color commentator for Ellison Eagles high school football games broadcast on KNCT-FM.

At CTC, I met my best friend, Brent Moore. We decided to become roommates, sharing a townhouse apartment in Harker Heights with a rent of $290! We lived together for five years. We had so many wonderful times together, mostly over-drinking at Cody’s Country Bar, water skiing, hunting, and working in the same business we both loved.

After graduation at CTC, I was hired (thanks to a recommendation from Brent) at KTON-AM/FM, in Belton, Texas, as a news reporter and mid-day news anchor. It was a great experience that came to an end after the station was sold and the new ownership fired everyone on staff.

I knocked on the door of KTEM-AM/KPLE-FM, Temple, Texas, looking for a job. While they had no openings, the general manager, George Franz, took a liking to me and told the sales manager to hire me as a copywriter, even though that position did not exist at the station. It was a wonderful break for me that led to three years of productive experience under George’s mentorship. I was happy to do whatever needed to be done at the station. I learned about station operations, promotions, traffic, programming, and sales. By the time I hit three years at the station, I had seniority over most people, was hiring part-time staff, and was responsible for operations of the station.

During my time at KTEM/KPLE, I had the opportunity to host KNCT-TV’s Pet Clinic. This live TV show featured interviews with local veterinarians and LIVE animal segments, including a show when rattlesnakes were dropped (accidentally) on the studio floor. I hosted the award-winning show for three years.

My best friend and roommate, Brent, was head of productions at KNCT-TV and offered me a job as a TV producer/director. The college had been awarded a contract by the U.S. Army to provide training and instruction to its troops, and I was hired to research, write, and produce training videos for the Army. I had the opportunity to travel across the country, creating about a dozen videos, including training videos for the M1 tank and Pershing Missile deception devices and a video on assembling, maintaining, and firing the M119 Howitzer. I had so much fun on these projects!

The position of radio program director became open at KNCT-FM, and I was hired by my CTC mentor and KNCT-FM station manager, Max Rudolph. He later became general manager of KNCT-TV/FM, and he promoted me to fill his job as station manager. A few years later, he left the station to run a station he purchased, and I, at the age of 29, was promoted to General Manager of the stations.

During my time in Texas, I married a girl I met at CTC, Michelle, who came with a one-year son, Ian, whom I adopted 17 years later. We had two daughters born in Texas, Erica (’91) and Emily (’93).

In the spring of 1996, I was offered the director of programming for WMFE-FM, the public radio station in Orlando, Florida, going from a very small media market to a media market 20.

Under another mentor, Stephen McKenney Steck, I quickly advanced through several positions, first becoming Vice President for Programming for both 90.7 and Channel 24, then VP for Operations, Executive VP, COO, and then CEO, replacing Steve. He had retired after 36 years at WMFE. During my tenure at WMFE, I updated our tv programming to provide kids programming all day, helped convert to digital TV, launched our website, added new local content to 90.7, and changed the FM format to all news, moving classical music to the then-new technology of HD radio.

The 2008 recession hit WMFE hard. After a couple of years of keeping the station afloat, the Board and I decided it was time to sell the TV station to protect 90.7, which was growing and making a significant impact in the central Florida community. This decision caused a lot of controversy for sure, and in the end, the station was sold to UCF. Yep, I sold the station to the university from where I flunked out almost three decades earlier. Go figure.

During the transition and pending sale of WMFE-TV, I had told the WMFE Board that once the deal was complete, there would no longer be a need for a CEO like me or a robust executive staff like the one we had at the time. Sure enough, after the sale was completed, the Board and I agreed to part ways. I loved my 16 years at WMFE, but I was burnt out, and it was time to do something else.

I started a consulting company, Twelve Consulting, LLC, which had a very successful six-month run until I was hired by another great mentor, Jacob V. Stuart, as Executive Vice President for the Orlando Regional Chamber of Commerce, a position I held for three years.

During my time at the Chamber, I was lucky enough to travel, representing the Chamber, to Turkey, Cuba (twice), Turino, Italy (for the World Chamber Congress), and Sorrento. I extended my Turino trip to visit Florence, which became my favorite destination in the world, a place I would visit again with my (now) wife, Jennifer, in 2018.

In the fall of 2015, after returning from a solo week-long Thanksgiving cruise to Central America and Mexico, I was contacted by a head hunter about an opportunity to run Hawai‘i Public Radio. After three years of being away from public radio, I was already beginning to get the itch to return to the career I loved. I interviewed for the job over Valentine’s weekend in 2016, was offered the job, and moved to Hawai‘i as President and General Manager of Hawai‘i Public Radio, starting the next chapter of my life. Bonus points because my son, Ian, was stationed in Hawai‘i with the Navy at that time.

I had a great 20 year run in Orlando, meeting so many wonderful friends and participating in so many wonderful events. I served on the Board of the Orlando Ballet and helped to secure the space for its new building. I played soccer for a team that became my second family (Go Great White Buffalo!) and spoke at three different Pecha Kucha events.

Almost a year later (January 27, 2017), I met Jennifer Barrett at an HPR event and we began to date in May. Later that year, we traveled to New Zealand. A year after that, we traveled to Venice, Florence, and Rome, and a year after that, we spent a week in Key West, Florida, after having her meet my kids and friends in Orlando.

We also enjoyed trips to several Hawaiian islands (Kaua‘i, Maui, and Hawai‘i Island), spent Thanksgiving one year wine tasting in Napa/Sonoma, and a few days one summer exploring Washington, D.C., including a tour of the new NPR headquarters, which as a former member of the NPR Board, I helped conceive.

Read my official Hawai‘i Public Radio (HPR) bio here.