Know the symptoms and treatments for this chronic, progressive neurological disorder.
For Laurada Byers, the 70-year-old founder of the Russell Byers Charter School in Philadelphia, the problems started with a foot that seemed to have a mind of its own. About 10 years ago, Byers realized that her propensity to walk out of her own shoes might be more than just clumsiness or ill-fitting footwear when her family was in town to spread her husband’s ashes – he’d been murdered right in front of her some 10 years prior during a botched robbery. “It was a horrible, wet and raining day, and I’m walking around Philly in my stocking feet” because she was having so much difficulty keeping her shoes on as she walked. “I thought, ‘my grandkids must think I’m crazy,’” so she made an appointment with a podiatrist. He referred her on to a neurologist, and with some effort, they determined that it was probably Parkinson’s disease, a chronic and progressive neurological condition that causes a variety of changes in the body and brain.
What Is Parkinson’s Disease?
The National Institute on Aging reports that “Parkinson’s disease is a brain disorder that leads to shaking, stiffness and difficulty with walking, balance and coordination.” The Parkinson’s Foundation reports that these changes are associated with a reduction in the levels of dopamine in the brain, a neurotransmitter that helps pass chemical signals between neurons. “Parkinson’s disease is a neurodegenerative disorder that affects predominately dopamine-producing (‘dopaminergic’) neurons in a specific area of the brain called substantia nigra” a structure in the middle of the brain that controls movement and is home to our feelings of reward.
A degenerative disease, Parkinson’s has no cure, and people with the disorder may spend many years progressively getting worse. Symptoms can vary widely from person to person, which is also part of why making a definitive diagnosis can be difficult. Symptoms of Parkinson’s disease may include:
- Tremor. Typically occurring in the hands or limbs, involuntary shaking is one of the hallmark symptoms of Parkinson’s disease.
- Slowed movement and rigid muscles. “Parkinson’s slows everything down,” Byers says, and this refers to both body movements and the functioning of internal organs. Slower-than-usual walking is a common sign.
- Cognitive changes. Increased confusion and difficulty concentrating are also common signs of Parkinson’s disease, and often, these symptoms progress and get worse over time. Many people with Parkinson’s develop dementia.
- Impaired balance. Walking and maintaining normal posture can become increasingly difficult as the brain signaling that helps you move slows down.
- Speech and writing changes. Parkinson’s disease can literally rob some patients of their voice, by making it softer and smaller and by making it difficult to speak for longer periods of time. Similarly, people with Parkinson’s often experience an involuntary decrease in the size of their handwriting. This small, cramped handwriting is called micrographia and is a hallmark of early symptom of Parkinson’s.
- Loss of automatic movements. Because everything slows down, automatic movements such as breathing can become more difficult over time.
- Sensory changes. Some patients experience a change in the way their olfactory sense works, meaning that they may smell things that aren’t there or their sense of smell disappears all together.
- Mood changes. Because Parkinson’s features a reduction in the levels of dopamine – a ‘feel-good’ chemical – produced in the brain, that can result in disruptions to normal mood. Many patients can become anxious, depressed or suffer from a very flat or apathetic mood.
- Constipation. “All of your muscles and your insides slow down,” Byers says, which leads many Parkinson’s patients to have difficulty moving their stools.
- Fatigue and disrupted sleep. The American Parkinson Disease Association reports thatsome 30 percent of Parkinson’s patients experience insomnia and sleep fragmentation, which may be related to anxiety and depression but may also be associated with the loss of dopamine in the brain. Byers says she often feels sleepy in the mid-afternoon, “and you’re never sure whether you’re tired in the afternoon because you’re 70 or is it because you’ve got Parkinson’s?” She says she often takes a nap in the afternoon and then is able to “go again in the evening.” Maintaining a consistent sleep and wake cycle can help smooth out some of the sleep-related symptoms of Parkinson’s disease.
- Difficulty swallowing. Also called dysphagia, difficulty swallowing tends to get worse as Parkinson’s progresses. “This is really scary,” Byers says, as choking on food can become an issue for some patients, and those with advanced Parkinson’s may need a feeding tube to ensure adequate nutrition. Drooling, the feeling of having food stuck in the throat, coughing when eating and frequent heartburn or sore throat can all be signs that you’re developing dysphagia.
- Weight loss. As eating become more challenging, many people with Parkinson’s may experience unintended weight loss.
What Causes Parkinson’s Disease?
Parkinson’s is a movement disorder and as such, shares some similarities to cerebral palsy, ataxia and Tourette syndrome. These disorders all feature changes in the nervous system that impact how a person moves. With Parkinson’s, the exact cause is still unclear, but inadequate dopamine levels in the brain seem to be a primary factor in why the disorder develops.
Who Is at Risk of Parkinson’s Disease?
Men are more likely to develop Parkinson’s Disease than women, but it can occur in both sexes. A 2016 study conducted in France found that men are 50 percent more likely than women to develop Parkinson’s. No one is sure why men seem to be at higher risk, but hormonal differences between the sexes may play a role in the disparity.
Age is also a factor. The NIA reports that “although most people with Parkinson’s first develop the disease at about age 60, about 5 to 10 percent of people with Parkinson’s have ‘early-onset’ disease, which begins before the age of 50. Early-onset forms of Parkinson’s are often, but not always, inherited, and some forms have been linked to specific gene mutations.”
How Is Parkinson’s Diagnosed?
Making a positive diagnosis of Parkinson’s disease isn’t always an easy proposition, as many of the symptoms overlap with those of other conditions and no test yet exists that can specifically pinpoint Parkinson’s as the cause. “Parkinson’s is a negative diagnosis,” Byers says, meaning that it’s a diagnosis of exclusion and in many cases, a doctor will prescribe medication hoping it makes a difference. “If you take the pills and it works, that means you have Parkinson’s. And if you take them and they don’t work, it means it’s something else,” Byers says.
However, she cautions other people who are being treated for Parkinson’s to know how the medication works. “Nobody ever told me that I shouldn’t take the pill with food,” but that’s exactly what she was doing. The proteins in the food she was eating were interfering with the efficacy of the medication, “essentially canceling each other out.” Because it seemed the medication wasn’t working, and the cause of her symptoms remained elusive, Byers went to the Mayo Clinic in Rochester, Minnesota, for further testing. Once there, she says she “had the shortest visit in the history of the Mayo. I walked into this doctor’s office and he asked me to walk down the hall. After he saw me walk, he said, ‘yes, you have Parkinson’s.’” Taking her medication well away from meal times made it much more effective, and she says her case has progressed relatively slowly and hasn’t been as severe as some.
Although there’s no specific test available that can directly diagnose Parkinson’s, your doctor may conduct some tests and examinations including:
- A physical exam. Your doctor will examine you, ask about symptoms and take a thorough medical history looking for clues as to what’s causing your symptoms.
- Blood tests. Routine blood work may show whether another condition is present and contributing to your symptoms.
- Imaging tests. Imaging tests such as an MRI, a CT scan, a PET scan or ultrasound can help your doctor rule out other conditions that could be causing your symptoms.
- Dopamine transporter scan. This test uses imaging technology to look for healthy dopamine neurons. The more of these that light up on the screen, the more healthy cells you have and the less likely a diagnosis of Parkinson’s will be made. Although most people receive a Parkinson’s diagnosis without the use of one of these single-photon emission computerized tomography scans, it may help your doctor rule out other conditions.
Which Doctor Can Help Me With Parkinson’s Disease?
If you begin to notice that you’re having any of the symptoms listed above, you should talk with your doctor as soon as possible. Most patients begin with their primary care doctor, but you may be referred onward to a neurologist for further evaluation and treatment.
Dr. Chad Hoyle, associate professor of neurology and program director for the neurology residency at the Ohio State University Wexner Medical Center, says that for patients with Parkinson’s disease and some other kinds of chronic neurological conditions “the neurologist does have that long-term relationship that goes over years and decades.”
But for some patients, getting in to see a neurologist isn’t as simple as making a phone call. A growing shortage of doctors in this specialty field is making it difficult for some people to get the care they need, especially those who live in rural or underserved areas of the country. If this is the case for you, Dr. Merit Cudkowicz, chief of neurology at the Massachusetts General Hospital, says it’s important to keep trying and ask to be seen sooner. Get on a cancellation list or keep looking for another doctor, because if it’s Parkinson’s the sooner you can start medical intervention, the better your outcomes are going to be. “I think it’s about advocating for yourself. The American Academy of Neurology is predicting a huge shortage of neurologists because of the aging population – Alzheimer’s, stroke and Parkinson’s – all these things that happen as you age. So I would say not to accept waiting 6 months if you think something is wrong.” She says two to three weeks is a more reasonable timeline.
How Is Parkinson’s Disease Treated?
Today, a variety of medications exist that can help boost levels of neurotransmitters in the brain that can help alleviate some of the symptoms of Parkinson’s disease. Medications you may be prescribed include:
- Carbidopa-levodopa (Sinemet). The Mayo Clinic reports that this is “the most effective Parkinson’s disease medication,” and that it’s a “natural chemical that passes into your brain and is converted to dopamine.”
- Carbidopa-levodopa infusion (Duopa). This gel-based infusion medication is typically delivered via a feeding tube and is intended for patients with more severe or advanced cases of Parkinson’s.
- Dopamine agonists. “Unlike levodopa, dopamine agonists don’t change into dopamine. Instead, they mimic dopamine effects in your brain,” the Mayo Clinic reports. This means that while they may be less effective than levodopa, they tend to last longer and can smooth out spikes and crashes in how you feel.
- MAO B inhibitors. These medications “help prevent the breakdown of brain dopamine by inhibiting the brain enzyme monoamine oxidase B,” the Mayo Clinic reports. These medications are often used in combination with other drugs to help control symptoms of Parkinson’s.
- Catechol O-methyltransferase (COMT) inhibitors. These medications prolong the action of levodopa.
- Anticholinergics. These medications block the neurotransmitter acetylcholine and can help control tremor.
- Amantadine. Sometimes used for less-severe cases of Parkinson’s or used in combination with carbidopa-levodopa for patients with later-stage disease, this antiviral medication provides relief from involuntary movements in some patients.
- Antidepressants. Some patients may receive antidepressant or anti-anxiety medications to help alleviate those symptoms. Because antidepressants affect brain chemistry, it’s important to work closely with your neurologist and possibly a psychiatrist to make sure the antidepressant medication won’t negatively interact with whichever other Parkinson’s medications you may be taking.
Some patients may also receive a treatment called deep brain stimulation. This may be useful for Parkinson’s patients who find that medications cause too many unwanted side effects or don’t control symptoms well enough and is more often used in later-stage cases of Parkinson’s disease. Deep brain stimulation uses an implanted electrode that delivers electrical impulses to a certain part of the brain to help control or block abnormal signals. This can help slow tremor and reduce the stiffness of muscles so that movement can become smoother and more natural.
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Self-Care for Parkinson’s Disease
Byers says that one of the most effective things she’s found to help ease her symptoms is exercise. “I do yoga, ballroom dancing, boxing and strength training. I’m sure in terms of the internal symptoms that helps, but it’s also about the mental symptoms. I don’t want to take a lot of antidepressants,” but she gets a boost of the same brain chemicals by moving as much as she can. “You’ve got to exercise,” she says, noting that focusing on “big movements” is a key thing. “The whole thing with Parkinson’s is that it makes everything slow down and makes you small. Your handwriting shrinks and the timber of your voice becomes softer.” Making big movements can help offset some of this natural tendency to get smaller, she says.
As difficult as it may be some days to find the energy to exercise and look after yourself, Byers says it’s the key to staying healthy as long as possible and experts agree. The Parkinson’s Foundation reports that “for people with Parkinson’s disease, exercise is not only healthy, but a vital component to maintaining balance, mobility and daily living activities, along with a potential neuroprotective effect.” And a 2018 study found that positive brain changes associated with physical exercise can offer a boost to Parkinson’s patients.
Though Parkinson’s can feel like an erasure of self sometimes, knowing that you can still have a hand in making things better for yourself can be an empowering feeling, Byers says. For her, having Parkinson’s has been a big reminder that she does have some degree of control in her experience with this progressive disease, a sentiment she’s shared in her recently published book, “Wild Wisdom: A Warthog’s Tale.” “People say you’re going to die of something. Most people won’t die of Parkinson’s. For some people, it’s a life-changer. For me, it’s made me more aware of taking care of myself. I have choices. I can take care of myself, and I’ll feel better.”