Being a caregiver for his father with Parkinson’s prepared Ethan for his own journey with the disease. Hear why he’s encouraged by current Parkinson’s research and how he is pushing to reduce disparities in diagnosis and care.
Brain diseases have a life-changing impact on individuals and their loved ones. When his father was diagnosed with Parkinson’s disease, Ethan Henderson took on a caretaker role. In addition to helping his father, Ethan also educated himself about the disease and became an advocate for others. When he received his own Parkinson’s diagnosis a few years ago, Ethan felt prepared for what lay ahead.
We spoke with Ethan about how Parkinson’s disease (PD) has impacted his life, his journey to a diagnosis, his experience as a caretaker, and the brain disease research that makes him hopeful for the future.
Becoming a Caretaker for Someone With Parkinson’s Disease
When Ethan’s father was first diagnosed in 2001, his family wasn’t sure what Parkinson’s disease was. “It was all new to us,” Ethan says. “We really hadn’t heard of it, so it was time for us to dive in and learn more.”
The family rallied together to support Ethan’s father and educate themselves about the disease. They learned that PD is a neurodegenerative disease that affects movement and is linked to a loss of dopamine, a hormone that regulates movement, memory, and other brain functions. Motor symptoms like tremor, stiffness, and slow movement are more well-known, but people with Parkinson’s also experience a range of non-motor symptoms such as voice volume issues, sleep disturbances, and memory problems.
As a caretaker, Ethan saw the impact of Parkinson’s on his father’s daily life, including not just what he struggled with but also what offered him relief. As a talented jazz pianist, his father had always expressed himself through music—and though PD impaired his motor skills, he was still able to play.
“The only thing that would help soothe him or get him through freezing periods [a temporary inability to move brought on by Parkinson’s] was playing the piano,” Ethan says. “[He would be] sitting down and barely able to move, just one hand pounding on the keys, and after about 15 or 20 seconds, he would burst into this beautiful romantic piano music. You would never think he had Parkinson’s.”
Receiving a Parkinson’s Disease Diagnosis
Despite becoming very familiar with PD and its symptoms while caring for his father, Ethan was initially misdiagnosed when he began experiencing symptoms of Parkinson’s himself. About eight years after his father’s diagnosis, Ethan started experiencing slight tremors, which he dismissed as being due to low blood sugar. When he developed numbness in his right leg, a doctor initially misdiagnosed it as a nerve condition. Meanwhile, the tremors got worse and started to impact Ethan’s ability to walk.
“I would drag my foot, and I tripped a number of times,” Ethan says. He finally received a correct diagnosis when visiting a pain doctor in 2016 for an unrelated issue. “When the doctor walked in, she said, ‘You know, you have Parkinson’s’—not even knowing my father had it or any familial history.” The doctor referred Ethan to a movement disorder specialist. “Sure enough, after a battery of tests, there it was,” he recalls.
Having been a caretaker for someone with Parkinson’s disease greatly impacted how Ethan handled his diagnosis. “It wasn’t shocking,” he says. “I knew I had a lifetime ahead of me, and I was just going to be smart about it.”
Finding Effective Treatments for Parkinson’s Disease
Because Ethan was caring for his father at the time of his own diagnosis, he was already aware of many of the available treatment options for Parkinson’s disease.
In addition to medications to increase dopamine levels, there are currently a range of other drugs that target specific Parkinson’s symptoms such as freezing, cognitive difficulty, and gastrointestinal issues. Ethan has found the dopamine promoter carbidopa-levodopa to be especially helpful. This medication has been around for decades, but recent advances in Parkinson’s treatment have resulted in an improved extended-release delivery system. “I can take one and have that spread out through four hours,” Ethan says. “That really helps reduce the number of pills that I have to take, which is great.”
Ethan also emphasizes the potential for physical and occupational therapy to give people the tools they need to live a robust life. He has experienced positive results with LSVT Big, a therapy program that trains people with Parkinson’s Disease to move more normally.
“You’re taught to use big movements, big facial expressions, big steps, big movement of the arms,” Ethan says. These large movements counteract the “shrinking” often associated with Parkinson’s and have helped Ethan when he can’t move as well as usual. “I will do some big exercises to get my muscles moving and blood flowing, and those really work,” he says.
Certain lifestyle changes can also make symptoms more manageable and potentially slow the disease’s progression. Ethan makes a point to exercise and eat a well-balanced diet to encourage optimum brain function and reduce movement and balance issues. He’s also seen positive results from meditation and mindful breathing techniques, which his wife introduced him to when he was first diagnosed.
“Meditation and breathing [exercises] have been a real benefit for me, because they help control anxiety as well as other issues that arise day to day with this disease,” Ethan says.
Critical Parkinson’s Research and New Discoveries
Ethan closely follows the latest brain disease research and regularly participates in PD research trials. He is particularly excited about the recent discovery of a biomarker for Parkinson’s disease. (A biomarker is a test or substance that indicates normal or abnormal biological processes or the presence of a disease or other condition.)
“I do think this news about the biomarker—the αSyn seeding assay—jumpstarts a lot of possible therapies and new ways of diagnosing Parkinson’s,” Ethan says. “I’m mindful that it will be years before we find a way to either slow down or stop the progression, but I know there are going to be some major steps happening from that [discovery].”
Ethan also closely follows research around other treatment options like deep brain stimulation (DBS) and focused ultrasound. DBS uses electrodes placed in specific parts of the brain to create electrical impulses that affect certain brain cells or modify patterns of brain activity. It has been used to treat symptoms of several brain diseases and disorders, including tremors due to Parkinson’s. Focused ultrasound is another new technology that targets tremors and dyskinesia (involuntary and erratic movements). This non-invasive treatment uses beams of ultrasonic energy to penetrate deep into the brain, targeting specific areas without damaging the surrounding healthy tissue.
The Benefits of Support and Education
A strong support network is crucial for dealing with a challenging disease like Parkinson’s. “You don’t know what each day is going to be like,” Ethan says. “One day you can wake up feeling on top of the world. The next morning, you can barely even get out of bed. It’s just really difficult.”
Having the love and support of family and friends helps Ethan get through those tough days. Ethan and his wife—who has dystonia, a neurologic movement disorder—always manage to find ways to assist and encourage each other through the various challenges they face in their household.
“I’m very lucky to have my wife, who helps when I need it but is also there to nudge me along and to remind me to do my exercises or [make] sure I have a balanced diet,” Ethan says. “I also have friends and family who check in and make sure we have what we need.”
Ethan credits his prior knowledge of the disease with being able to process his diagnosis and quickly make a plan of action. He believes that educating people about the disease can offer hope to others who receive a Parkinson’s diagnosis. “It is not a death sentence,” he says.
Disparities in Care and Advocating for Equity in Brain Health
In becoming a patient advocate for the neurodegenerative disease community, Ethan became more and more aware of existing disparities in brain health and care for marginalized communities. “The cost of Parkinson’s medication is sky high,” he says. “I’m privileged to have a wonderful benefits package, but many people without good insurance may be faced with the choice, “Can I buy my medicine or do I need to put food on the table for my family?’”
In addition to economic barriers to care, underprivileged communities have less access to specialists and facilities with specialized equipment. That means people in these communities are less likely to be correctly diagnosed and receive adequate treatment. Ethan is currently working with members of Congress and the Arizona state Senate on the National Plan to End Parkinson’s Act, a bill that will provide resources dedicated to diagnosing and treating Parkinson’s to communities across the U.S.
Ethan notes that in the past, Parkinson’s has been seen as “a white man’s disease,” but thanks to advocacy and an investment in expanding research, that is starting to change.
“[Researchers are] really doing a fantastic job now of focusing on different backgrounds—socioeconomic as well as racial,” he says. “This allows us to learn more about the disease because research can then be more multifaceted.”
Hope for People Living With Parkinson’s Disease
What gives Ethan the most hope for the future? Recent breakthroughs and discoveries in brain disease research—even those not directly concerned with Parkinson’s disease. “[Even] the new Alzheimer’s medication the FDA approved… gives those of us with Parkinson’s hope that there will be a breakthrough [for] other types of closely related diseases,” he says.
When researchers work together across disciplines, we are more likely to discover connections between brain diseases that lead to breakthrough insights and cures. For example, the American Brain Foundation is currently partnering with the Alzheimer’s Association, The Michael J. Fox Foundation for Parkinson’s Research, and the American Academy of Neurology to fund our Cure One, Cure Many Award for the early diagnosis of Lewy body dementia (LBD). By convening these major research partners to find a biomarker for LBD, we increase our chances of this research having a ripple effect across Parkinson’s, Alzheimer’s, and other neurodegenerative diseases.
Only by continuing to fund research will we discover a cure for Parkinson’s and the other brain diseases that impact millions of people worldwide. Ethan wants people to know that every donation positively impacts people living with brain disease.
“You may think that your small gift doesn’t mean anything,” he says, “but it all adds up.”
The American Brain Foundation is committed to finding cures for brain diseases. Donate today to make a difference. With your help, we can all experience life without brain disease.