Living With Chronic Disease
- John Driskell Hopkins, of the country music group Zac Brown Band (ZBB), was diagnosed with a progressive neurodegenerative disease called amyotrophic lateral sclerosis, otherwise known as ALS and Lou Gehrig’s Disease back in 2021. As the musician is still singing, performing, and raising awareness for the disease, he says he’s “feeling good” amid adversity.
- According to Johns Hopkins Medicine, amyotrophic lateral sclerosis (ALS), which is also known as Lou Gehrig’s disease after an iconic baseball player who passed away from the disease, is a fatal type of motor neuron disease.
- “It causes progressive degeneration of nerve cells in the spinal cord and brain. ALS is one of the most devastating types of disorders that affect nerve and muscle function,” Johns Hopkins explains, noting that the disease doesn’t affect senses, like seeing or hearing, and mental function. It’s also not curable.
- Overcoming adversity can seem daunting — but having a plan can make it feel achievable. It’s important to remember when setting goals that breaking them into smaller steps is key.
In a recent interview with Atlanta News First, Hopkins looked back on when he first noticed something was off with his body, saying, “My right hand was slowing down to the point where I couldn’t play double time. I can’t [strum] with any accuracy.”
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His interview comes just one month after Hopkins spoke about his ALS journey with CBS News, where he said, “When you’re given a life-threatening diagnosis, you really start to focus on things that matter.”
Hopkins also shared that he’s “going to sing through” his battle with ALS, as music makes him happy.
Following his diagnosis, Hopkins, who shares three daughters with his wife Jennifer, created “Hop On A Cure” to offer others hope in battling ALS.
Hop On A Cure’s website explains, “With so many questions and unknown answers after receiving a fatal diagnosis, Hop and his wife, Jen, consumed every bit of information they could about ALS. They quickly realized the progress toward finding a cure has been painfully slow and that ALS research has been severely underfunded in comparison to other diseases we’ve managed to overcome.
“Hop and Jen decided to become part of the solution, and in May of 2022, they launched the Hop On A Cure Foundation. Their goal is to bring a new spirit to the fight, leaving no stone unturned, and doing everything in their power to continue generating awareness and funding for research to slow the progression of ALS and ultimately find a cure.”
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Meanwhile, earlier this year, Hopkins told Fox News Digital that he saw a few different neurologists prior to his official diagnosis.
He told the news outlet, “I told the guys back in 2019 that there was something wrong with me, like before COVID. My bluegrass hand was … this hand was still doing great and this hand was slowing down.
“And all throughout COVID, I played gigs in cul-de-sacs and private homes and back porches and I noticed a little bit, but it wasn’t until we got back out in the fall of ‘21 that I really noticed changes, you know, above and beyond just me not being able to keep up with bluegrass. It was more like, I was laughing on stage, and my legs were locking up, you know, that kind of thing … when you have this emotional reaction your body will tense up, and other things.”
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He added, “It wasn’t until two neurologists missed it that we landed on the third, and got the diagnosis.
“Honest to God, I’m just grateful to be sitting here talking to you two years later, almost two and a half years later, and not be in a wheelchair.”
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Understanding Amyotrophic Lateral Sclerosis (ALS)
According to Johns Hopkins Medicine, amyotrophic lateral sclerosis (ALS), which is also known as Lou Gehrig’s disease after an iconic baseball player who passed away from the disease, is a fatal type of motor neuron disease.
“It causes progressive degeneration of nerve cells in the spinal cord and brain. ALS is one of the most devastating types of disorders that affect nerve and muscle function,” Johns Hopkins explains, noting that the disease doesn’t affect senses, like seeing or hearing, and mental function. It’s also not curable.
ALS usually affects people between the ages of 40 and 70, but it has been seen in younger people. It also affects all races and ethnic groups.
Johns Hopkins explains there’s two types of ALS:
- Sporadic. The most common type of ALS the U.S., making up 90% of cases. These cases arrive randomly with no family history.
- Familial. This type is inherited and affects a lesser number of people.
As for how the disease got it’s name, the ALS Association says, “Amyotrophic’ comes from the Greek language. ‘A’ means no. ‘Myo’ refers to muscle. ‘Trophic’ means nourishment. So, amyotrophic means ‘no muscle nourishment,’ and when a muscle has no nourishment, it ‘atrophies’ or wastes away.
“‘Lateral’ identifies the areas in a person’s spinal cord where portions of the nerve cells that signal and control the muscles are located. As this area degenerates, it leads to scarring or hardening (‘sclerosis’) in the region.”
Learning to Live With a Rare Disease
Many people living with rare disorders have difficulty getting the correct diagnosis, finding experts who can treat them, or explaining their condition to others.
Despite the frustration many may have, it’s important to advocate for your own health which is some cases, could mean being pushy when seeking a diagnosis, treatment options, and more.
“The truth is you have to be in tune with your body, and you realize that you are not the statistic,” Dr. Zuri Murrell, a colorectal cancer surgeon at Cedars-Sinai, told SurvivorNet in a previous chat.
“…It’s important for you to actually educate yourself and be your own health care advocate,” he added, noting he recommends every patient seeking answers about a health condition go to their doctors appointments with a plan.
Dr. Zuri Murrell explains why it’s important to advocate for yourself in healthcare settings.
“My plan would be [saying], ‘hey, doc, I would prefer to see whether or not this treatment you have works. But let me come back in a month,'” Dr. Murrell added. “If it’s not working in a month, what would the next step be? And the doctor should be able to tell you, if it’s not working in a month, then I would do this … As a healthcare professional, that’s what I do for all my patients.”
Have 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.”
And if you’d prefer to search for clinical trials on a more user-focused 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.
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.
Overcoming Adversity
If you’ve been through a difficult health challenge or any type of adversity throughout your live, Psychologist Dr. Samantha Boardman suggests learning to play up your strengths.
“I sometimes will ask patients, tell me about yourself when you were at your best,” she explained. “Using that story, trying to figure out what strengths come to mind. Is it patience? Is it appreciation of beauty? It is perseverance? [Then we can] use those strengths in constructive ways to navigate their cancer journey.”
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Dr. Boardman says another way to approach harnessing the strength you already have is by tapping into your values. This could be family, close friendships, spirituality, or commitment to a healthy lifestyle.
Reminding yourself of what your values are and how you are living accordingly is another way to unleash that inner strength.
Lastly, patients shouldn’t underestimate the value of simply opening up, Dr. Boardman says. This could mean speaking to a close family member or friend, or it could mean seeking support in other ways by finding a therapist that meets your needs or looking into joining a support group.
Having negative feelings throughout your cancer journey is to be expected, however, doctors will tell you that people who find a way to work through the emotions and stay positive tend to have better outcomes.
“A positive attitude is really important,” says Dr. Zuri Murrell, a colorectal surgeon at Cedars-Sinai Medical Center in Los Angeles. “I’m pretty good at telling what kind of patients are going to still have this attitude and probably going to live the longest, even with bad, bad disease. And those are patients who, they have gratitude in life.”
Contributing: SurvivorNet Staff
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