If you’ve seen “Back to the Future,” you’re familiar with the very recognizable character Marty McFly — and probably know the character was played by actor and activist Michael J. Fox. You might also know that just six years after the 1985 release of the film, Fox was diagnosed with early-onset Parkinson’s disease at 29. His story sparked conversation around the possibility of getting Parkinson’s disease when you’re still young, a conversation that continues today.
The possibility of getting Parkinson’s disease when you’re young is a scary thought. Typically, those who are diagnosed with Parkinson’s disease are older, averaging around age 60 when diagnosed. But about 5% to 10% of people with Parkinson’s experience onset before age 50 — with half experiencing onset before age 40. Men are also 1.5 times more likely to receive a diagnosis. This is known as early-onset Parkinson’s disease. And though rare, it’s even possible to be diagnosed in your early 20s.
But just because it’s possible to have Parkinson’s when you're young doesn’t mean you will, though it’s still important to know the signs and symptoms of the disease.
What is Parkinson’s disease?
Parkinson’s disease is a neurological disease. Symptoms typically include slowness of movement; muscle stiffness or rigidity; a resting tremor that happens when you’re totally relaxed as opposed to when you’re doing something; and postural instability, which is a problem with balance for no apparent reason, says Dr. Cyrus Zabetian, a neurologist who studies the genetics of neurodegenerative diseases at the University of Washington School of Medicine and sees patients at the VA Puget Sound Health Care System.
Parkinson’s is caused by the loss of several types of brain cells, most importantly those that produce the neurotransmitter dopamine, called dopaminergic neurons. Dopaminergic neurons have many functions in the brain, from processing mood and stress to controlling voluntary body movement.
“It’s a normal part of the aging process for these neurons to die out, but it happens a lot quicker with Parkinson’s disease,” says Zabetian.
For those who develop early-onset Parkinson’s disease, their symptoms might not be as noticeable as those who develop older-onset Parkinson’s disease after age 50. For example, someone with early-onset Parkinson’s disease might display some of the same symptoms as someone who develops Parkinson’s disease when they’re older, like tremors and rigidity, but other symptoms like loss of balance, memory issues and confusion are less frequent.
Also, when you’re young, the side effects of certain medications and the symptoms of some medical conditions could mimic the symptoms of Parkinson’s disease. This is why it’s important to check with your doctor when you notice changes in your body — it could seem like early-onset Parkinson’s but really be something else entirely.
Why do some people get Parkinson’s when they’re young?
As mentioned, Parkinson’s disease at any age can look similar. Still, there are a few reasons why some people develop Parkinson’s disease while they’re young and others when they’re older. Environmental and genetic factors play a role.
“The reason you get Parkinson’s disease is a combination of what you’ve experienced in your environment and those genetic factors,” says Zabetian. “With some people, genetics plays a big role, and that’s more likely to be true in early-onset Parkinson’s disease. With others, exposure to environmental factors is the main driving force, and genetics takes a back seat.”
Some of these environmental factors that are thought to cause Parkinson’s disease include exposure to heavy metals or pesticides or excess use of illicit drugs or other substances that might have altered brain chemistry.
Additionally, head injuries like those someone might get while playing sports, riding motorcycles or doing other risky activities can also increase the risk.
Even if you’ve been exposed to some of these environmental factors or if you’ve had a previous injury, it doesn’t mean you’ll get the disease. Bodies are weird; sometimes, there’s no real way to predict how yours will handle these factors. What’s most important is to listen to your body and talk with your doctor if you suspect symptoms of Parkinson’s disease.
What are the symptoms of early-onset Parkinson’s disease?
The experience of Parkinson’s will typically look different for someone with early-onset Parkinson’s versus someone who gets a Parkinson’s diagnosis later in life.
“Someone in their 70s may be retired and have less stress, meaning their cognitive abilities are pushed less often,” says Zabetian. “Someone in their 30s consistently has their physical and mental abilities pushed to the limit more often. Problems with thinking or slow movement might not be noticed at first when you’re 70, but when you’re 30 and in a demanding job, you or someone close to you will notice a lot sooner.”
Signs can look different for everyone. Being aware of how your body responds to your daily life is key to identifying potential symptoms, but ultimately, there are a few specific symptoms that are most often associated with Parkinson’s.
Slow movement
“Slow movement can look like the slowing of your normal walking pace or cause you not to swing one or both of your arms while you’re walking,” says Zabetian. “It also impacts the accuracy of the movement of your hands, causes your voice to become soft and affects how much expression you have in your face — think like having a poker face.”
Tremors
Tremors are a common, noticeable symptom of Parkinson’s. They usually present as a slow shake that might start in one hand, leg or foot, then eventually spreads to both sides of the body as the disease progresses.
Instability
“Usually later in the disease, people can have postural instability, which can cause falls. As it progresses, people will have to use a walker, a cane or a wheelchair,” says Zabetian.
What are the treatment options for early-onset Parkinson’s?
Usually, medications are the first line of treatment. The most common medications are converted to dopamine in the brain, partially restoring dopamine levels. They can sometimes cause abnormal, involuntary movements called dyskinesias, especially if you’re on the drugs for an extended time. This is typically a problem with those with early-onset Parkinson's since they have longer to be on the medications.
Because of that, people with early-onset Parkinson’s will generally be given a dopamine agonist, which directly binds with dopamine receptors in the brain, Zabetian says. They’re not as effective, but patients are less likely to have some of those side effects like dyskinesia.
Another option is deep brain stimulation, which can treat most Parkinson’s symptoms.
“Surgeons place an electrode in the basal ganglia, a region of the brain which is connected to the dopamine neurons,” says Zabetian. “Stimulating this area partly makes up for the loss of dopamine, which in turn treats the symptoms.”
Researchers at UW Medicine have extensively explored the benefits of deep brain stimulation for Parkinson’s and say it may be an option for some patients, particularly those with advanced disease whose medications have become less effective. Zabetian notes that it’s a great option for those who experience unmanageable side effects from medication or those who have to take the medications many times throughout the day.
What’s next with early-onset Parkinson’s treatment?
Zabetian says that a lot of money is currently being spent on research that will help find ways to slow down the disease — it’s only a matter of time.
“What we’re trying to develop are disease-modifying treatments that would slow down the process so your dopamine cells wouldn’t die off at such a fast rate,” says Zabetian. “That would slow the rate at which your symptoms worsen over time which is not something that our current treatments can do.”
In the meantime, Zabetian encourages people who have received an early-onset Parkinson’s diagnosis to explore support group options.
“If there’s anyone who has been recently diagnosed, they should try to see if the support group helps them. It can be good to know that others understand and people support you,” says Zabetian. “And if someone starts to have symptoms, I urge them to see a neurologist because starting treatment usually makes your life better — there’s no reason to delay that. Everyone deserves to know their options so that they can make an informed decision about the treatment that’s best for them.”