Understanding Alan Jackson's Degenerative Disease
- Country Singer Alan Jackson, who is living with a rare degenerative disease called Charcot-Marie-Tooth disease (CMT) is celebrating the birth of his second grandson.
- Jackson, a loving husband and dad to three daughters, was diagnosed with an incurable disease called Charcot-Marie-Tooth (CMT) disease in 2011. This condition causes muscle atrophy and weakness in the feet, legs, hands, and arms.
- Reaching milestones while living with a disease is huge. These events like getting engaged, reaching another birthday, or celebrating the birth of your second grandchild may mean even more than they did previously, so it’s important to take them all in and celebrate all that you’ve overcome.
- Additionally, having family support (like Jackson does) before, during and after a diagnosis is an important part of one’s journey to recovery.
- 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 MoreJackson, along with his wife of more than 40 years, Denise, share three daughters together, Mattie, Alexandra, and Dani. His other daughter Alexandra, welcomed her first child, and Jackson’s first grandson, Jackson Alvie Bradshaw, back in December 2022.View this post on Instagram
His daughter Mattie took to social media this week to share her exciting news, by posting a sweet photo of her newborn son on Instagram, writing alongside it, “One week ago my life was forever changed. Wesley Alan Smith joined our little family on June 20th, the absolute best birthday gift I could have ever imagined. There is no greater honor in life than being chosen by God to be your mom. And no sweeter joy than watching your daddy adore you and protect you already.
“Even Ryman has reluctantly warmed up to her new little brother. You have all my heart and my prayers, baby boy. If you’re anything like both your namesakes (Connor’s grandad and @officialalanjackson ), you’ve got quite a life ahead of you.”
Prior to the birth of Wesley Alan Smith, Jackson took to Instagram to share a photo of his family announcing Mattie was pregnant.
He wrote, “Bessings are overflowing in our growing family! Denise and I are thrilled for our second grandson to arrive in June!
“We’re so happy for proud parents @mattiejackson and Connor Smith and can’t wait to meet the next addition to our family. – AJ.”
View this post on Instagram
We’re happy to see Jackson’s family continuing to grow, especially as he nears retirement.
Earlier this year, he shared the 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 is set embark on his last tour on Aug. 2 in Boston, which will see him perform through May 17 of next year in various states like Florida, Montana and Utah.
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.”
Denise and I are celebrating our 43rd wedding anniversary with our new grandson Jackson Alvie Bradshaw.
Ali and Sam welcomed Jack into the world on Dec 13, 2022.
So happy that this little guy has made us grandparents! -AJ pic.twitter.com/gc9PghhUtg
— Alan Jackson (@OfficialJackson) December 15, 2022
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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.”
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.
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, 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).”
The Importance of Milestones
For cancer survivors and their families, or anyone living with a disease, reaching life’s milestones is a big deal.
Milestones can be the birth of a child or grandchild, getting married, traveling on a dream vacation, reaching another birthday, or even enjoying Father’s Day. Most importantly, these milestones during or after cancer tend to have a more significant meaning since many cancer patients will gain a greater sense of gratitude from all they’ve endured.
WATCH: One cancer survivor’s incredible story detailing the value of milestones.
Aside from commemorating milestones, standard day-to-day activities can also feel more special, such as planning a nice dinner or spending time working with a cancer charity.
The way you memorialize your cancer milestone could also be independent of others in the form of simple reflection or a walk in nature. Survivorship, overall, can enhance the time you spend doing all of the above.
Supporting a Family Member Through a Health Struggle
People like Alan Jackson can feel a wide range of emotions when confronted with a diagnosis of a rare disease or cancer. Many may feel depressed, anxious, worried, overwhelmed, and even full of grief. Support your loved one as best you can by being a loving, listening ear and lending support.
Dealing With Grief After a Cancer Diagnosis
Dr. Scott Irwin, director of supportive care service at Cedars-Sinai, explains in an earlier interview the grief that may accompany a cancer diagnosis. “Grief comes in waves,” he says. “It often gets better over time, but at certain days, it can look like depression. And other days, people look perfectly normal and can function.”
“They’re grieving the change in their life, the future they had imagined is now different,” says Dr. Irwin, of how a person may feel after getting a cancer diagnosis.
“In cancer care, sometimes, we’re actually forcing some body changes that are beyond what would be normal aging, and that can be even harder for people to deal with where they don’t feel like themselves.”
Family Love and Support Makes a World of Difference During Cancer Treatment
Contributing: SurvivorNet Staff
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