Understanding Alan Jackson's Degenerative Disease
- Country singer Alan Jackson, who has been living with the degenerative nerve condition Charcot-Marie-Tooth disease (CMT), has officially completed his final tour, marking another milestone in his retirement journey and moving fans by sharing a heartfelt onstage dance with his wife in Nashville, Tennessee.
- Jackson, who officially closed out his road performances in Milwaukee, was diagnosed in 2011 with Charcot-Marie-Tooth (CMT), an incurable condition that leads to muscle weakness and wasting in the feet, legs, hands, and arms.
- According to the CMT Research Foundation, a nonprofit founded in 2018 to advance treatments through biomedical research, CMT is a “progressive, degenerative disease involving the peripheral nerves that branch out from the brain and spinal cord to other parts of the body, including the arms, hands, legs and feet.” The condition was first identified in 1886 by doctors Jean-Marie Charcot, Pierre Marie, and Howard Henry Tooth.
- Living with a rare disease often creates a unique set of challenges. If you are struggling to find treatment options, check out SurvivorNet’s clinical trial finder.
According to the National Institute of Neurological Disorders and Stroke, CMT leads to “damage to the peripheral nerves the nerves that transmit information and signals from the brain and spinal cord to and from the rest of the body, as well as sensory information such as touch, back to the spinal cord and brain.” The condition can also affect the nerves that help muscles function properly.
Read MoreFans praised Jackson and his wife on social media with one commenting, “Denise & Alan Jackson are a Beautiful Couple & they have a Beautiful Family! I love Remember When!!”
Another wrote, “They danced just like they did in the video for the song.”
“She has stuck beside of him all of these years. That’s def his soulmate,” commented a third.
Lyrics from the song’s opening verse are as follows: “Remember when I was young and so were you / And time stood still and love was all we knew / You were the first, so was I / We made love and then you cried / Remember when.”
Later in the song the lyrics refer to their three children, and he sing: “Remember when / The sound of little feet / Was the music we danced to week to week / Brought back the love, we found trust / Vowed we’d never give it up / Remember when.”
In another expression of his deep love for his wife, Jackson released his rendition of “Still The One” on June 25, 2026 as a single. The track is a cover of the 1976 hit by Orleans, newly recorded by Jackson for a special release.
An Instagram post promoting the song was captioned, “One of Alan’s most cherished memories is meeting his future wife, Denise, while she practiced her cheerleading routine to ‘Still The One,’ originally recorded by Orleans.
“Nearly 50 years later, she’s still the one.”
View this post on Instagram
In a heartfelt Instagram post reflecting on Jackson’s final Nashville show, his official account shared photos from the night and wrote, “We sure did have a good time.
“More than 80,000 people across Music City came together to celebrate, and we’re grateful for every one of you!”
The event featured an all-star country lineup, with appearances from Kelly Sutton, Luke Bryan, Eric Church, Luke Combs, Riley Duckman, Cody Johnson, Miranda Lambert, Little Big Town, Jake Owen, Jon Pardi, Thomas Rhett, George Strait, Carrie Underwood, Lainey Wilson, Lee Ann Womack, Adam Wright, Big City Rocks, and Carlisle Wright.
View this post on Instagram
Alan Jackson’s Rare Disease Diagnosis
Alan Jackson was diagnosed with Charcot-Marie-Tooth disease in 2011, according to an interview with the “Today Show.” He revealed his diagnosis publicly about a decade later.
“I’ve been reluctant to talk about this publicly and to my fans, but it’s been a while, and it’s starting to affect my performance on stage a little bit where I don’t feel comfortable,” the singer said, when he disclosed show his diagnosis on the “TODAY” show in September 2021.
“I just wanted the fans and the public to know if they’ve come to see me in the last few years or if they come to see me in the future if I play anymore, what’s going on. I don’t want them to think I’m drunk on stage because I’m having problems with mobility and balance. I have this neuropathy, neurological disease I inherited from my daddy.”
View this post on Instagram
Charcot-Marie-Tooth disease is an “inherited nerve defect that causes abnormalities in the nerves that supply your feet, legs, hands, and arms,” Johns Hopkins Medicine explains.
In Jackson’s case, the disease affects his balance and mobility, which impacted his ability to perform on-stage as he had in the past.
“I know I’m stumbling around on stage. Now I’m having a little trouble balancing, even in front of the microphone, and so I just feel very uncomfortable,” he said.
Patients diagnosed with Charcot-Marie-Tooth disease may manage their symptoms through medications, and physical and occupational therapy designed to strengthen their muscles.
View this post on Instagram
Understanding Charcot-Marie-Tooth (CMT) disease
According to the CMT Research Foundation, a nonprofit founded by patients in 2018 that focuses on treatments and cures through supporting biomedical research, explains, CMT is a “progressive, degenerative disease involving the peripheral nerves that branch out from the brain and spinal cord to other parts of the body, including the arms, hands, legs and feet,” which was discovered in 1886 by doctors Jean-Marie Charcot, Pierre Marie, and Howard Henry Tooth.
“Typically, the brain and nerves are constantly communicating with each other. But with CMT, the motor nerves (the nerves that control our muscles) and sensory nerves (the nerves that carry sensory information like pain and temperature to the brain) don’t work properly. They have trouble sending signals to and from the brain. This results in numbness, sensory loss, muscle weakness/atrophy and nerve degeneration. Over time, the muscles weaken and deteriorate,” the foundation explains on its website.
“Symptoms may begin as early as birth or during adulthood, and they become gradually worse over time. There are currently no treatments or cures for CMT.”
Although there are no known treatments or cures for CMT, symptoms may be managed through:
- Pain medication
- Braces or splints to support feet and ankles
- Custom-made shoes or shoe inserts
- Physical therapy maintain muscle strength and flexibility
- Occupational therapy
- Surgery to fix joint deformities
- Hearing aids to cope with hearing loss
George Simpson, with the CMT Research Foundation, previously shared the following statement to SurvivorNet, “More people have CMT than have multiple sclerosis or ALS, including 150,000 Americans and nearly 3 million people around the world. CMT is one of the most common inherited neurological diseases.
“It has been suggested that CMT is more prevalent than statistics indicate because of misdiagnosis or delayed emergence of symptoms. Common symptoms – including tripping, clumsiness, lack of balance and tactile issues – are often attributable to other diseases, which can lead to misdiagnosis.”
Additionally, the disease, which has been labeled as progressive and degenerative, is “most often genetically inherited from a parent but can also be a result of a spontaneous mutation (where neither parent has CMT).”
Coping With a Rare Disease? Here are Some Resources
All sorts of feelings of anxiety, fear, and loneliness can come with the diagnosis of a rare disease. But it’s important to know you’re not alone. Below are some helpful resources for the many people affected by lesser-known or less-researched diseases.
Academic Centers and Comprehensive Care Centers
For some rare disease warriors, community centers provide great treatment options. But for people with rare conditions, cancer or otherwise, more specialized care may be required. In that case, the most effective place to find a specialist is often at academic centers and comprehensive care centers.
In a previous conversation with SurvivorNet, Dr. Kenneth Miller, director of outpatient oncology at the University of Maryland’s comprehensive cancer center, explained what differentiates a “comprehensive cancer center” from other treatment providers.
Seeking Care at a Comprehensive Cancer Center
“Pretty much automatically, there’s going to be a team approach [to your care],” Dr. Miller said. “Surgical oncology, medical oncology, radiation oncology, and all the support services, and also wonderful pathology and radiology.”
Dr. Miller added that at a comprehensive cancer center, all of these different specialists work together as a team to help you find the best course of treatment for your specific kind of cancer.
“We call it a tumor board, a group to go through all the details of your case so you get a group of very smart people coming up with a plan together that is hopefully optimal and gives you the best chance of doing well.”
Clinicaltrials.gov and the SurvivorNet Clinical Trial Finder
Another place to turn to when you’ve been diagnosed with a rare disease and you’re considering experimental treatment )or trying to find specialists) is clinicaltrials.gov, a database maintained by the U.S. government that compiles privately and publicly funded clinical trials conducted around the world.
Clinical trials themselves are research studies that compare the most effective known treatment for a specific type or stage of a disease with a new approach.
Clinical Trials Can be Life-Saving for Some
Clinicaltrials.gov can help you explore possible treatment options by looking at trials that are actively recruiting. The site also provides the information of some of the most specialized doctors in a specific field since they often end up leading clinical trials that advance our understanding of diseases.
By searching your disease on Clinicaltrials.gov, you will usually come across a list of many studies. The lead researcher will be listed under the heading, “Investigators.” Lead researchers in studies on rare diseases are typically doctors who have specialized in the study of that condition.
And if you’d prefer to search for clinical trials on a more user-friendly site, try SurvivorNet’s new A.I. driven tool built on top of clinicaltrials.gov: the SurvivorNet Clinical Trial Finder. This tool is updated daily and gives users access to more than 100,000+ individual clinical trials to help them find treatment options.
To use the SurvivorNet Clinical Trial Finder, simply answer some basic questions using our custom-designed chat feature and we’ll send clinical trial options within your region right to your email. In simplifying the search, we hope to offer multiple opportunities for clinical trial sponsors and clinical research organizations to engage with patients.
“Clinical trials are critical to the development of new therapies, and as we live through this extraordinary revolution in genomics, immunotherapy and targeted therapy, it’s clear that one of the most pressing needs for patients, clinical trials sponsors, and researchers is simply a better way to find patients,” SurvivorNet CEO Steve Alperin said. “Even one percent more people successfully enrolled in clinical trials can change the world.”
PubMed
Similar to clinicaltrials.gov, PubMed is another place to turn if you’re looking to research your rare disease. This website includes more than 33 million citations for biomedical literature from MEDLINE, life science journals, and online books.
If you type in your disease, you’ll see a list of studies and articles about the condition. You can even add a filter to only look at clinical trial information. By looking at the doctors associated with the published clinical trial results and other articles, you may be able to find doctors that specialize in research for your disease.
Newly-Developed Drugs
For those who’ve been recently diagnosed with a rare disease, we also want to highlight reasons for hope since there is something of a revolution going on in the development of drugs for rare diseases.
The sequencing of the human genome has enabled doctors to take new approaches to treating some of these uncommon conditions. One step you may take after being diagnosed with a rare disease is looking into the drug companies developing drugs to treat your condition.
Compassionate Use and Off-Label Use
Drug companies may be able to help patients enroll in clinical trials, and in some rare cases, they may even be able to offer “compassionate use.” Compassionate drug use makes a new drug that has not been fully approved available to a patient facing a serious illness. This only typically happens when a patient has exhausted all other treatment options, but it is an important option to understand.
Similarly, researching drug companies may be a path to “off-label” drug use. Off-label drug use involves taking a drug that has been approved for treating one condition in the hopes that it may treat another condition that it has not yet been approved for.
Contributing: SurvivorNet Staff
Learn more about SurvivorNet's rigorous medical review process.
