Getting Back to Music After a Scary Diagnosis
- Country star Alan Jackson shared that he is still writing songs and hopes to release new music, more than a year after announcing he had Charcot-Marie-Tooth disease.
- Charcot-Marie-Tooth disease affects the muscles, mostly in the arms and legs, and can lead to loss of sensation and difficultly walking.
- Jackson admitted that after a decade of living with the inherited disease, he was having difficulty with mobility and balance while performing on stage.
- 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.
Speaking to his daughter on her podcast, “In Joy Life With Mattie Jackson,” the “Chattahoochee” singer said he has continued writing and hopes to release new music in the future.Read More
What Is Charcot-Marie-Tooth Disease?Charcot-Marie-Tooth disease is a group of disorders that cause nerve damage, mostly in the arms and legs, according to the Mayo Clinic. The disease can cause smaller, weaker muscles and may lead to loss of sensation, muscle contractionsm trouble walking. When disclosing his diagnosis in September 2021, Jackson said his ability to walk was affected. The singer told the TODAY show that the disease may have affected how he appeared to fans on stage as well.
“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,” he said. “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.”
Living with a rare disease often creates a unique set of challenges. If you are struggling to find treatment options for any sort of illness, check out SurvivorNet’s clinical trial finder.
Living With a Rare Disease
Jackson has been dealing with Charcot-Marie-Tooth for more than a decade, and his dedication to learning to live with the rare disease serves as an incredible inspiration. Living with a rare disease can be particularly challenging because it may be more difficult to find doctors with experience treating the illness. There may be less knowledge about the condition and fewer resources than there are for more common ailments.
In a previous conversation with SurvivorNet, Shennea Dixon, who suffers from a rare illness called Von Hippel-Lindau Disease, said the need to advocate for yourself becomes even more important for patients in these situations.
“You have to be an advocate for yourself,” she said. “You have to stand up for yourself and not be afraid to ask questions.”
Shennea Dixon, who has VHL, shares her advice for others living with rare diseases.
Another piece of advice Dixon had is reaching out to others who have been through similar struggles. There are many online communities available for people living with all sorts of illnesses — even rare ones.
“Just seeing there’s other people going through this as well has helped me just realize that, even though I don’t necessarily know these people personally, there are other people going through what I’m going through,” Dixon said.
Coping With Mental Health Struggles
Many people presented with new and difficult challenges to their health may find themselves struggling mentally as well. Problems with mood and overall mental well-being can be attributed to several factors. For some people it’s genetic, while others may be experiencing a response to some sort of stressor or past trauma. When it comes to living with a health issue, mental health struggles may be the result of feelings of anger or resentment about the diagnosis.
Dr. William Breitbart, chair of the Department of Psychiatry and Behavioral Sciences at Memorial Sloan Kettering Cancer Center, told SurvivorNet that anger is the go-to response for some when they feel they have fallen short, or will fall short, of some life goal.
Psychiatrist Dr. William Brietbart explains how he helps patients dealing with grief and frustration.
Dr. Breitbart explained that one way professionals can help those dealing with these feelings is to encourage them to accept themselves the way they are — only human.
“The last resort of relieving existential guilt is this act of being able to forgive yourself for being a human being that is vulnerable and susceptible to not being able to fulfill their full potential. So, it’s forgiveness ultimately,” he said.
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