When the inaugural Jammin’ For Philzo Kick-Off Concert took place in August 2022, Philip Jackson says he wasn’t sure he would be around for a second fundraiser this year.

Philip, who retired as chief executive officer of the Arkansas State University System Foundation in December 2022, was diagnosed with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, a year earlier.

The Path to Diagnosis

Before his initial diagnosis in December 2021, Philip said he had begun having what his doctor described as a postural change in February of that year.

“My head dropped,” said Philip. “I wrote it all off to poor posture at work and playing guitar for so many years, and you know, kind of being hunched over.”

He began seeing an osteopathic doctor, who Philip said was treating his symptoms as more of a structural problem, but more and more symptoms began to surface.

“I was playing a gig in Memphis, and my hands froze up and I dropped a pick,” he said. “I couldn’t stretch my fingers, so I was having cramping, and I started to have balance issues. Breathing was actually the first symptom that I had when somebody told me that it was potentially ALS.”

Philip and his wife, Lisa, soon realized that it is very common for ALS patients to search tirelessly for a diagnosis, especially if they are not in a city large enough to have an ALS clinic.

“You start going to doctors for a variety of symptoms,” said Philip. “I went for carpal tunnel, I went to a neurosurgeon for neck drop … it was just a variety of issues,” he said. “Finally, the neurosurgeon told me that I needed to see a neurologist specializing in all of my global symptoms. I was hopeful that it could be taken care of with surgery because there was some suggestion that I potentially had a neck issue and that it could be corrected. Finally, we got in at UAMS (University of Arkansas for Medical Sciences) and they made the diagnosis, which was confirmed by the Mayo Clinic in January 2022.”

ALS is a rare nervous system disease that weakens muscles and impacts physical function. As nerve cells break down, it reduces the functionality in the muscles they supply.

“A problem that ALS patients have is they get bounced around a lot,” said Philip. “After the diagnosis at UAMS, we decided to go to Mayo and get a second opinion and an overall checkup. I was in great health for someone my age. I just had this ALS problem. The irony was not lost on me.”

Since his diagnosis, Lisa says they have since discovered an ALS clinic at Semmes-Murphey Clinic in Memphis.

“We can get there much faster than UAMS,” said Lisa. “Memphis is closer, and the clinic is more accessible. It’s a great resource, and they have been funded by the ALS Association of Tennessee … it’s a very holistic one-stop shop for ALS sufferers, so you see social workers, you see respiratory therapists, you see occupational therapists, PT – all of that is right there.”    

Semmes-Murphey Clinic also has an ALS closet that the couple says has been invaluable to them. As the disease progressed, they were able to borrow equipment from the ALS closet, such as a lift and a shower chair, and were able to borrow a power wheelchair before Philip’s was made.

Before receiving the additional equipment, Philip says he had begun falling frequently over the course of a few months.

“I was still trying to walk,” he said. “I was still trying to use a walker and make my way down the hall and get out of bed or wherever it may be, and it just got where I had fallen several times and hit my head.”

Both Lisa and Philip were quick to praise the Jonesboro Fire Department for assistance on multiple occasions.

“You call them and in five minutes they’re here,” said Philip. “There’s three of them picking me off the floor checking my vital signs, making sure I’m OK, and they were just great about it.”

“It’s not an overnight thing,” said Lisa of the disease’s progression. “It’s a very gradual process. It’s not gradual enough, but you think you can still walk and you’re still trying to walk, but you’re mostly in a chair.”

“You’re just trying to retain it before it all goes away,” said Philip.

A Passion for Music

Philip moved with his family from Long Beach, Calif., to Jonesboro in 1967. He attributes his early passion for music to having older siblings and listening to radio stations on the West Coast.

“I loved music,” he said. “I had been listening to The Beatles since their very first record. My dad brought that home and we played it on the family turntable. When I was in the fourth or fifth grade, I got a very cheap acoustic guitar. I took lessons from Sister Celestine, but that didn’t take because I think she saw some ability and wanted me to be a classical guitarist and I had a mental block – I wouldn’t read music. I just had to hear it on the radio and play it.”

A few years later, he tried guitar lessons again.

“In seventh grade, I took guitar lessons from a man named Steve Jones, who is now deceased,” said Philip. “He was in a band called the 1932 Ballroom Blues, and he was great. He taught me theory for people who don’t read music.”

 Philip says he began performing in a high school band called “Bang,” and later played rockabilly music in the ‘90s with the late Larry Donn Gillihan. He also had the opportunity to perform with Jon Conley, who grew up in Paragould and now plays guitar for Kenny Chesney.

Philip said he became more active as a musician in the last 20 years, playing music on the side, but due to the progression of ALS, he is no longer able to play.

“My last gig at The Recovery Room was July 2022 and it was really good, but my neck was hard to lift up,” he said. “It was painful. There was no comfortable position that I could get in on a stool. And the last time I played live was August of 2022 at an outdoor event in Jonesboro.”

Although he can no longer play the guitar or sing, Jackson has not let ALS stifle his love for music. He wrote the song, “Remember,” which was lyrically cowritten with his wife, and was able to record the song even after his diagnosis.

“It’s almost a metaphor for our relationship in a way because I feel like we’re closer than we’ve ever been,” said Philip. “And that’s kind of the unfortunate side of it. You get sick and you and your partner are having to face your mortality and what it means to stay alive and to live, but if I had I been able to physically write my own lyrics, I never would have asked her what she thought about any kind of music or to contribute to the lyrics or anything like that. It has turned out to be the most beautiful thing that I’ve ever been affiliated with musically.”

The goal of recording the song, he says, was to springboard the upcoming concert. Other musicians collaborating on “Remember” include Philip’s longtime friends Jim Little and Mike Cobb, with Nathan Crouch providing background vocals. A friend of Lisa’s, artist Lori Vrba, created a video for the song using her own artwork.

“I really believe that I saw a change in him when he let go of the fact that music was never going to be what it was and found a new way to do it,” said Lisa. “That just opened him back up, and he and Jim just started recording all these old songs that they had worked on before.”

Since his ALS diagnosis, Philip, Little and Cobb have finished five songs with two more in the works.

“Music has been such a gift,” said Lisa. “It was the thing that he got maddest about when it first started happening, because it (ALS) took his hands and it was infuriating. What really keeps him going and engaged with life I think is the music.”

While Philip says his return to music has been great, he credits Lisa with helping him navigate life with a terminal illness.

From helping him attend and dance with his daughter, Sophie, at her recent wedding to orchestrating a trip to the beach this summer, Philip says he appreciates the tireless effort his wife puts in as caregiver.

“I just could not do this without Lisa,” he said.

A Kick-Off Concert to Defeat ALS

Last year’s inaugural Jammin’ For Philzo Kick-Off Concert was spearheaded by Tracy McAlister Owens and Vicki McGee. Held at The Recovery Room, the concert raised approximately $7,500 for the ALS Association and served as a kick-off for the Walk to Defeat ALS. All efforts for the ALS Association raised $45,000 during the first year.

In addition to the important goal of raising money for ALS, Philip said last year’s concert was a true celebration with friends.

“It was just joyful,” he said. “People said the nicest and most supportive things, and those things really do lift you up and keep you going. It was such a wonderful feeling.”

This year, the second annual kick-off concert moves to a larger venue with the concert set for Aug. 4 at The Glass Factory. Doors open at 5:30 p.m. with the concert beginning at 6. Tickets are $150 and include dinner and a drink.

“Vicki is the musical director, and Mike Cobb is the band leader,” said Philip. “They are putting it all together because, fortunately, a lot of people have wanted to play. You make a lot of friends playing music over the years, and they want to help.”

Musicians taking the stage this year include Cindy Paul, Eli Adams, Jacob Brumley, Jim Gramling, Jim Little, Jon Evans Conley, Keith Croft, Larry Rothgery, Maddie Smith, Matt Pierce, Mike Cobb, Nathan Crouch, Jeff, Ryan, Bill Gramling, Mike Tuseth, Terry Carter, Vikki McGee and Sonny Campbell.

For more information or to purchase tickets, find the Jonesboro Walk to Defeat ALS Kick-Off Concert on Facebook.