Understanding Alan Jackson's Degenerative Disease
- Country Singer Alan Jackson, who has been living with a degenerative disease, a rare nerve disorder called Charcot-Marie-Tooth disease (CMT), has finally completed his last concert on the road, another step toward retirement.
- Jackson, who concluded his road tour in Milwaukee over the weekend, was diagnosed with an incurable disease called Charcot-Marie-Tooth (CMT) disease back in 2011. This condition causes muscle atrophy and weakness in the feet, legs, hands, and arms.
- 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.
- 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 causes “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.” It can also “directly affect the nerves that control the muscles.”
Read MoreSpeaking onstage at the event, he explained further, “We’re planning on doing a big finale show in Nashville next summer sometime. I just felt like I had to end it all where it all started, and that’s in Nashville, Tenn.
“But this is the last one out on the road for me.”
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Alongside footage from the event, Jackson’s official Instagram page recapped the night saying, “Thank you @fiservforum for letting us play you some real country music and making our last one on the road unforgettable! #LastCallWithAlan.
“We’ll see y’all in 2026 for one final night in Nashville.”
In a video clip, shared in the video compilation, Jackson is also seen telling his fans, “It’s the last night out on the road for me and it’s been a crazy ride.
Supporters of Jackson offered words of praise and heartfelt comments, with one saying, “A night we’ll Remember When forever! Thank you for closing out an epic tour & your time on the road with us in Milwaukee.”
While a fan commented, “Thank you Alan for 30 plus years of giving us your amazing writing and your music, real country music at that! I STILL REMEMBER hearing ‘Here in the real world’ for the first time and thinking to myself woah that guy has extraordinary talent!
“Thank you sir for never giving in and conforming to the demands of the ever changing music industry. YOU always stood your ground and produced nothing but PURE GOLD COUNTRY MUSIC and for that WE thank you and [love] You!!!!! May the Lord Bless you and your family in this next season!”
Another wrote, “Already looking forward to 2026. Please give us plenty of notice…don’t want to miss that night to remember!!”
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Jackson’s final show on the road doesn’t come as a surprise as last year, the country star shared following statement on his website, in regard to his farewell tour, saying, “Fans know when they come to my shows, they’re going to hear the songs that made me who I am – the ones they love.
“I’ve been touring for over 30 years – my daughters are all grown, we have one grandchild and one on the way…and I’m enjoying spending more time at home. But my fans always show up to have a good time, and I’m going to give them the best show I can for this Last Call.”
Jackson embarked on his last tour on Aug. 2 in Boston, and performed through May 17 of this year.
Coping With a Diagnosis
In the statement shared via his website, he added, “Most of my fans know I have a degenerative health condition that effects my legs and arms and my mobility that I got from my daddy and it’s getting worse.
“So, it makes me more uncomfortable on stage, and I just have a hard time, and I just want to think about maybe calling it quits before I’m unable to do the job like I want to.”
Alan Jackson’s Nerve 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.”
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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.
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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
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