A tremor, stiffness, or slower movements are signs of Parkinson’s disease. These changes can spark fear and uncertainty. It’s not unusual for individuals to delay being evaluated by a neurologist by rationalizing that these symptoms could be due to normal aging, stress, side effects to medication, or even arthritis. But, it is essential to take a proactive approach when dealing with Parkinson’s – face it head on. Play offense, not defense. Making lifestyle changes and implementing compensatory strategies early in the disease process will enable you to better handle the challenges ahead. It IS possible to live with Parkinson’s, but first you must understand what Parkinson’s is – the causes, symptoms, and diagnosis process. Just like any project you’ve tackled throughout your lifetime, fully understanding the problem and anticipating possible obstacles and setbacks will help you and your Care Partner develop a more effective action plan. 

What Causes Parkinson’s?

Parkinson’s disease develops when neurons that produce a chemical called dopamine die or become impaired. By the time someone shows any symptoms of the disease, they have already lost 60-80% of their dopamine-producing neurons. This sounds really scary, doesn’t it? It’s okay. Keep reading so you will understand what’s happening in the brain. 

Dopamine is a critical neurotransmitter that controls automatic muscle movements – these are the many everyday actions you would normally perform without conscious thought or effort. It can be something as simple as putting on your seatbelt. When you get in your car, do you think about how to put on your seatbelt? Probably not. You perform this action automatically while starting your car, turning on the radio, and talking to the person sitting in your passenger seat… but not with Parkinson’s. 

Swinging your arms when you walk is another example of an automatic movement that could be impacted by not having enough dopamine. As Parkinson’s progresses, other automatic movements such as walking, talking, or swallowing could also be impacted. 

Before you become anxious or worried, though, let me tell you some good news. Humans have two motor systems: automatic and intentional. Even though the automatic motor system is heavily dependent on dopamine, our other motor system – our intentional motor system – is not. In other words, you have a back up motor system that you can control. Think of it like a back up generator that is activated when the first system fails. 

Although researchers have not pinpointed the exact causes behind the loss of dopamine-producing neurons, studies suggest a combination of genetic and environmental factors may play a role. Family history, exposure to pesticides, head trauma, and environmental toxins have all been linked as possible contributors. 

Dr. Ray Dorsey, a neurologist, researcher, and public health advocate has spent his career exposing the environmental drivers of neurological disease. In his presentation, Dr. Dorsey outlines what he and his colleagues have uncovered about toxins and chemicals, as well as his vision of a future where conditions like Parkinson’s are rare. If you’ve already been diagnosed with Parkinson’s, you might think it’s too late for this information to benefit you, but it’s not. Individuals with Parkinson’s need to preserve the dopamine neurons they have left, so please watch Dr. Dorsey’s presentation and take the necessary steps to reduce your exposure to everyday chemicals. For more information, read The Parkinson’s Plan: A New Path to Prevention and Treatment by Dr. Ray Dorsey and Dr. Michael Okun.

The Four Cardinal Symptoms of Parkinson’s

Parkinson’s is clinically defined by four primary motor symptoms, known as the “cardinal symptoms.” These are the hallmark signs neurologists look for when making a diagnosis:

• Resting Tremor: Involuntary, rhythmic shaking that often affects a hand or foot while at rest. A resting tremor usually diminishes when the body part is engaged in movement. For example, a person might notice a hand shaking while it’s resting on the lap, but when the person reaches out to pick up a glass, the tremor goes away.
  
• Slowness of Movement (Bradykinesia): A reduction in the speed and size of movements. Examples of bradykinesia include taking longer to get dressed than usual or having trouble keeping up when walking alongside a friend. Smaller movements can result in shuffling steps or handwriting that becomes tiny and difficult to read (micrographia).
  
• Impaired Balance (Postural Instability): Difficulty maintaining posture, leading to unsteadiness and an increased risk of falls.
  
• Rigidity: Stiffness or inflexibility in the limbs or trunk that can be worse in the mornings, but still persistent throughout the day. 

A Parkinson’s Myth

Muscle weakness is not a primary symptom of Parkinson’s, as it might be with other neurological disorders. The disease does not directly weaken muscles. Instead, weakness may gradually appear because smaller movements lead to underuse of the muscles. For example, if a person continually walks with small, tiny steps, the leg muscles can become weaker, not because Parkinson’s is directly making them weak, but because the person is not using the leg muscles to their full capacity. The old adage, “use it or lose it,” definitely applies to Parkinson’s.

Beyond the Cardinal Four: Non-Motor Symptoms

While the four cardinal motor signs are key to diagnosing Parkinson’s, many individuals also experience non-motor symptoms. These can appear years, even decades, before the cardinal signs and may include:

• Sleep disturbances, such as acting out dreams
  
• Depression and anxiety
  
• Loss of smell
  
• Constipation and digestive issues
  
• Cognitive changes, such as slower thinking or mild memory problems
  
• Fatigue and reduced energy levels
  

These non-motor symptoms are often less visible but can impact quality of life as much or more than motor symptoms. Recognizing and addressing them early helps create a more comprehensive plan of action for people with Parkinson’s and their Care Partners.

How Is Parkinson’s Diagnosed?

Diagnosis of Parkinson’s is primarily a clinical process conducted by a neurologist, ideally a movement disorder specialist. While a general neurologist diagnoses and treats a variety of different neurological disorders, a movement disorder specialist is a neurologist with specialized training and expertise in “movement disorders,” such as Parkinson’s. They will also be up-to-date on Parkinson’s medications and current research. To find a movement disorder specialist, contact your local Parkinson’s Support Group for referrals, ask other people with Parkinson’s, or visit the website of the International Parkinson and Movement Disorder Society. If there isn’t a movement disorder specialist in your area, find a neurologist who has a high caseload of individuals with Parkinson’s. 

Because there is no single blood test or imaging scan that can 100% confirm a diagnosis of Parkinson’s, a neurologist relies on a combination of a thorough case history and clinical observations.

• Case History: Gathering information about symptoms, medical background, lifestyle, and family history. It is especially pertinent to note when the symptoms were first noticed and how they may have progressed over time.
  
• Neurological Examination: Assessing movement, coordination, reflexes, and posture. The neurologist looks for at least two of the four cardinal motor symptoms as they conduct their exam: tremor, slowness of movement, stiffness, and impaired balance. Testing might include watching you tap your fingers or tap your foot. It could also include asking you to hold up your hands, close them tight, and then open them quickly while spreading out the fingers (like “jazz hands”) and then repeating this action over and over quickly. The neurologist might watch you get up from a chair and walk down a hallway.
  
• Diagnostic Imaging: CT or MRI scans might be ordered, but these tests are to rule out other disorders that might be mimicking Parkinson’s. A DAT scan (Dopamine Transporter Scan) may be used to measure dopamine activity and support the diagnosis, but it is rarely the sole diagnostic tool. There is also a skin test that helps to support a diagnosis of Parkinson’s.
  

The only definitive diagnosis of Parkinson’s is through pathological examination of brain tissue after death (autopsy). Otherwise, diagnosis is based on clinical features and is often confirmed with a positive response to Parkinson’s medications. Symptoms are then monitored every six months.

Managing a Parkinson’s Diagnosis with INTENT

As stated earlier in this post, the loss of dopamine disrupts the automatic motor system, which controls smooth and unconscious movements. People with Parkinson’s must learn to activate the intentional motor system instead.

So many of our daily actions are automatic, and we can take them for granted. Think about driving. Have you ever driven down the road and suddenly realized you weren’t paying attention? Did you arrive at your destination anyway? You were using your automatic motor system. But, have you ever driven down a highway when it started pouring down rain? Did you turn off the radio, put both hands on the wheel, and lean forward a bit? You shifted from the automatic motor system to the intentional motor system. 

The intentional motor system is powerful. In fact, I’d argue that INTENT is the most important word for individuals diagnosed with Parkinson’s and their families. By learning to focus, concentrate, be purposeful and deliberate in our daily movements, you can learn to live with INTENT.

Although this post can’t explain all the ins and outs of managing Parkinson’s with INTENT, below is a list of essential actions to start the process. As you read the list, you’ll notice that these are good suggestions for the general population; however, while others would also benefit from this list, it is essential for individuals diagnosed with Parkinson’s and their Care Partners. For additional tips, download Parkinson Voice Project’s Step-By-Step Plan for Living with INTENT.

• Identify what matters most: Talk with your Care Partner about what’s most important to both of you. With Parkinson’s, you may not be able to do everything or attend everything you used to. It is important to identify your life’s priorities. For example, spending time with your children or grandchildren might be of high importance, but attending the annual neighborhood get together may not be. Another example might be that you enjoy planting a garden and eating fresh vegetables, but doing other yardwork is something you do because you have to, not because you enjoy it. Living with INTENT means you might decline the invitation for the neighborhood event and hire someone to mow your lawn so you can spend your time and energy on what matters most. 
• Get organized: Eliminate clutter throughout your home. With Parkinson’s, you want to intentionally simplify your surroundings and focus on those items that you need and which bring you joy. Clutter increases stress, causes anxiety, and reduces one’s focus. Parkinson’s symptoms are worse when under stress. Being disorganized can have a negative impact mentally and physically for individuals with Parkinson’s and their care partners. Managing Parkinson’s is like managing a big project – there are many moving parts. Being organized is essential.   
• Automatic versus Intentional: Become an expert on the automatic and intentional motor systems. Identify which daily actions used to be automatic but now must be purposeful and deliberate (e.g., getting dressed, loading the dishwasher, putting on a seatbelt, driving, walking, talking, swallowing, writing). Increasing your awareness throughout your day will prompt you to be deliberate, focus more on a task, and use more INTENT.
• Schedule a SPEAK OUT!^® Evaluation: The premise of Parkinson Voice Project’s SPEAK OUT! Therapy Program is to speak and live with INTENT. By going through the program, you will not only strengthen your speech and swallowing muscles, but you will gain deep insight into the power of intention. Ninety percent of individuals notice changes in their speech and swallowing, so early intervention is critical. By enrolling in SPEAK OUT! Therapy, you will be surrounded by clinicians and others with Parkinson’s (and their families) who are choosing to take a proactive approach to managing Parkinson’s.  
• Schedule a PWR! Moves Evaluation: Every person with Parkinson’s must engage in daily exercise, but it’s critical to work with a physical therapist specifically trained to treat Parkinson’s. Learn about PWR! Moves, and find a therapist trained in the program. Dr. Becky Farley, the developer of PWR! Moves was a featured presenter at Parkinson Voice Project. Watch this lecture to learn more. 
• Build your Care Team: Managing Parkinson’s with INTENT means being deliberate as you build your care team of doctors, therapists, and other professionals. Do your research. Find the best services available to you. For example, as you search for a pharmacy, don’t choose the one that is down the street from you simply for convenience. Is the pharmacist regularly available, patient, and willing to answer questions? Are the pharmacy hours convenient for you? Does the pharmacy deliver? Be deliberate by building your care team with the very best, most qualified, and most compassionate professionals. 

Moving Forward with INTENT

A Parkinson’s diagnosis changes many things, but it does not take away your ability to act with purpose. With education, awareness, and deliberate planning, people with Parkinson’s can continue to live well and stay in control of their journey.

Managing Parkinson’s with INTENT means taking an active role in understanding symptoms, following through with therapy, and making choices that protect your wellbeing. It is a daily practice of being mindful, organized, and proactive.

Each step taken with INTENT builds confidence and strengthens the connection between body, mind, and community.