A Parkinson’s diagnosis brings up a lot of questions for most people. Here are the answers to some of the big ones about living with PD and the steps you can take to live well.
Parkinson’s is a progressive, neurodegenerative disorder. In other words, Parkinson’s is a lifelong condition that affects the brain and worsens over time. Parkinson’s happens when cells in the brain that produce dopamine stop working or die. Dopamine is a neurotransmitter, which is a chemical that sends messages between nerve cells or between nerve cells and muscle cells to help the body function. Dopamine plays many roles in the body and affects both physical and mental function.
The cardinal symptoms of Parkinson’s are resting tremor, rigidity, slowness of movement (also called bradykinesia), and feeling unsteady and having difficulties with balance (also called postural instability). Because these symptoms are related to movement, they are called “motor symptoms” and Parkinson’s is classified as a “movement disorder.”
However, we now know that Parkinson’s also causes non-motor symptoms. These symptoms include constipation and other gastrointestinal issues, urinary problems, mood changes, sleep disturbances, memory and thinking (cognitive) deficits, sexual problems, excessive sweating, vision problems, and loss of smell or taste. Non-motor symptoms may appear many years before the motor symptoms that eventually lead to a diagnosis.
The symptoms of Parkinson’s are unique to each individual. If you’re living with Parkinson’s, it’s important to know the range of symptoms so that you can recognize them and work with your doctor to determine the best treatment plan.
Both genetic and environmental factors play a role in developing Parkinson’s. That’s why you probably won’t get a clear answer if you ask your doctor what caused your diagnosis. Researchers have identified genes that are associated with Parkinson’s, but the percentage of cases that can be attributed to a single genetic mutation is low. On the other end of the spectrum, environmental causes, such as pesticide exposure, have also been associated with an increased risk of developing Parkinson’s. A genetic mutation or environmental exposure may increase your risk of Parkinson’s, but it doesn’t necessarily mean you’ll get the disease.
For a more detailed discussion of the causes of Parkinson’s, check out The Michael J. Fox Foundation’s coverage of this topic.
There is currently no diagnostic tool to definitively diagnose Parkinson’s disease. Instead, your doctor will look for physical clues—the cardinal symptoms of Parkinson’s—during a neurological exam. A Parkinson’s diagnosis is based on a person having at least two of the cardinal symptoms of the disease. Slowness of movement must be present for a person to be diagnosed with Parkinson’s along with one or more of the other cardinal symptoms.
Some people have a predominant resting tremor at the time of diagnosis. Other people may not have a tremor, but still receive a Parkinson’s diagnosis based on symptoms of slowness, rigidity, and other movement problems that are characteristic of PD. Postural instability may also be present at the time of diagnosis, but this symptom is usually associated with later stages of the disease.
A family physician or internist may make the initial Parkinson’s diagnosis, but they should refer you to a neurologist or movement disorders specialist for follow-up. A movement disorders specialist is a neurologist with special training in Parkinson’s and other movement disorders. If you’ve been diagnosed with Parkinson’s but have not seen a movement disorders specialist, you should ask your doctor for a referral.
Sometimes, symptoms that look like Parkinson’s may be caused by medications or another similar disorder. In that case, a neurologist or movement disorders specialist may order a brain imaging test called a DaTscan to help confirm a Parkinson’s diagnosis. That being said, most people do not need a DaTscan to confirm a Parkinson’s diagnosis.
While there is no cure for Parkinson’s disease, there are treatments to help manage the symptoms and improve quality of life.
Medications and surgical options can also help manage the symptoms of Parkinson’s. But there is no treatment that can slow, stop, or reverse the underlying disease.
Motor symptoms can be treated with a variety of medications. Most of these medications work by increasing or mimicking dopamine in the brain. These medications come in different forms, such as pills, patches, or infusions. They may also be combined with other treatments that can help extend how long the medications work and lessen potential side effects.
Deep brain stimulation (DBS) is a surgical treatment for Parkinson’s. Thin metal wires are placed in the brain during DBS to send electrical pulses that help control some motor symptoms.
Treatments for motor symptoms may also help with some non-motor symptoms. There are also treatment options specific for a non-motor symptom. For example, depression is common in Parkinson’s and can be treated with counseling, and, when appropriate, anti-depressant medications.
Other therapies include physical therapy, occupational therapy, speech language therapy, and behavioral therapy to help improve physical and emotional symptoms associated with Parkinson’s. A movement disorders specialist can help with medical treatments and referrals to healthcare providers to manage both motor and non-motor symptoms. It’s important to keep track of the symptoms you’re experiencing so that you can talk with your doctor to determine the best treatment plan for you.
There is a saying that “once you’ve met one person with Parkinson’s, you’ve met one person with Parkinson’s.” That is because each person with Parkinson’s has their own unique experience with the symptoms of the disease.
Parkinson’s is associated with a range of motor and non-motor symptoms. In other words, some of your symptoms will be related to movement and some will not. Learning about Parkinson’s so that you can recognize your symptoms and talk to your healthcare providers about them will help you make a treatment plan that works best for your unique experience. Your symptoms will change over time, so having a healthcare team that can work with you to update your treatment plan is an essential part of your Parkinson’s journey.
Another great way to learn about Parkinson’s is to meet others with the disease. Support groups, exercise classes and other events for people with Parkinson’s can help you connect to an understanding community. Sharing your experience with others can be very helpful on your journey with Parkinson’s.
Research has also shown that exercise, nutrition and other healthy behaviors can help with the symptoms of Parkinson’s. The goal of this website is to provide you with tools that can help you manage your Parkinson’s symptoms and improve your quality of life with the disease.
Exercise! There is no single better therapy for managing Parkinson’s symptoms and improving quality of life. All exercise is good exercise, and activities that you enjoy can give you a boost physically and mentally.
A healthy diet is also important for managing Parkinson’s symptoms and improving overall health. Constipation, sleep disturbances, anxiety and depression are among some of the common symptoms of Parkinson’s that can be helped with diet. A healthy diet can also support healthy brain functions.
Staying socially engaged and doing the things you enjoy with the people you love is also vital for your physical and mental health. We suggest finding a Parkinson’s exercise class near you so that you can meet others in the community while gaining the benefits of physical activity.
If this list feels overwhelming, don’t worry. We’ve put together a guide that gets you started on your journey to live a healthy, fulfilling life with PD.
And remember: small changes in your lifestyle can make big differences to your health and quality of life. Start slowly and do what’s possible today—even if it’s just five minutes. Every step you take, big or small, is a step in the right direction!
Want to learn more about living with PD?
Here are a couple great next steps: