Country Singer Alan Jackson, 62, Reveals Charcot-Marie-Tooth Disease Diagnosis
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Country singer Alan Jackson opened up about his battle with Charcot-Marie-Tooth disease (CMT), which affects his ability to walk, balance, and stand.
The 62-year-old was diagnosed with the degenerative nerve condition 10 years ago.
Though the disease impacts his performance, he plans to continue touring as much as he can.
CMT is not life-threatening, but there is currently no cure.
Country music star Alan Jackson revealed he was diagnosed with Charcot-Marie-Tooth Disease (CMT) nearly 10 years ago, according to an interview with TODAY. The 62-year-old opened up about his struggle with the hereditary condition, which affects his ability to walk, explaining that after 10 years of silent suffering he felt it was time to tell his fans about his condition.
“I’ve been reluctant to talk about this publicly,” Jackson said in the interview. “I have this neuropathy and neurological disease. It’s genetic that I inherited from my Daddy.” Jackson’s grandmother, father, and sister all suffer from CMT, according to TODAY interviewer Jenna Bush Hager.
The Country Music Hall of Famer said he decided to discuss the disease as fans may start to notice some differences in his performances. “I was starting to get so self-conscious up there stumbling around. I think it could be good for me to get it out there in the open. I think if anybody is curious why I don’t walk right, that’s why,” Jackson said.
The singer added that the disease is not life-threatening, but will likely continue to alter how he walks and plays his music. “There’s no cure for it, but it’s been affecting me for years. And it’s getting more and more obvious. And I know I’m stumbling around on stage. And now I have a little trouble standing in front of the microphone, and so I just feel very uncomfortable. It’s not going to kill me, it’s not deadly,” he said in the interview.
What is Charcot-Marie-Tooth disease, anyways?
The umbrella term refers to any peripheral neuropathies disease that affects the nerves that leave the spinal cord and go down to the hands and feet, that are inherited, genetic diseases, explains Michael E. Shy, M.D., professor of Neurology at the University of Iowa. And though Jackson suggested in the interview a relationship between CMT and Parkinson’s or muscular dystrophy, that’s not necessarily correct. Though all three are degenerative diseases, Parkinson’s and muscular dystrophy are muscular issues, while CMT is related to nerves.
CMT affects one in 2,500 people, and there are more than 100 different genes that are known to cause CMT. Depending on a patient’s specific gene, their symptoms will present themselves differently and have different severities, Dr. Shy adds.
The symptoms of CMT vary. “It causes weakness, numbness, often pain and fatigue in the arms and legs, and typically the longer the nerve, the more severe the symptoms,” explains Kurt Florian P Thomas, M.D., M.A., Ph.D., M.S., founding chair and professor at the Department of Neurology at Hackensack Meridian School of Medicine and Hackensack University Medical Center. Many people who suffer from CMT get weakness in their feet and hands, have difficulty feeling things, and problems with balance. This is because the nerves that tell your brain where you are can be impacted by the disease, Dr. Shy adds.
In rare cases, people can have lung problems, according to Dr. Thomas. And it’s common for patients with CMT to experience an emotional response from experiencing life differently from others due to their disability, he adds.
Though the disease is not life-threatening, symptoms typically impact the everyday lives of patients. Currently, there’s no known treatment for CMT, but doctors have found ways to make day-to-day activities easier and more manageable for patients.
In addition to physical and occupational therapy, patients may require wheelchairs and walking aids, Dr. Shy says. Patients can also turn to special tools (like button-close strings or loops to attach to zippers) for help with hand issues and ankle braces to support walking and reduce fall risks, Dr. Thomas adds. Occasionally, foot or ankle surgery can be very successful, he says.
“There are no current cures, but there is an evolving new era for many neurodegenerative diseases and gene therapy, gene replacement studies, and ways to control the expression of diseases being tested,” Dr. Shy says.
But there is hope for the future of the disease. “As a fellow CMT patient, I feel complete empathy for Alan Jackson and his struggles living with this disease for over a decade,” says Allison Moore, founder and CEO of the Hereditary Neuropathy Foundation. “Today we stand proudly on the forefront of the first potential drug to treat CMT. We’ve never been more hopeful and excited to help the millions of CMT families like Alan Jackson’s live long and healthy lives.”
And for fans that worry Jackson’s music will soon come to an end due to his diagnosis, the musician is confident that he can continue playing for years to come. “I won’t say I won’t be able to tour. I’ll do as much as I can,” he said in the interview with TODAY.
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