The ABC's of Parkinson's Disease

An incomplete list of symptoms and treatments that most people know nothing about.

The information presented here is based on personal experience and research. It should not be regarded as medical advice.

Photo by Brett Jordan on Unsplash

Since my husband, Mike, was diagnosed with Parkinson’s Disease in 2018 (after many years of symptoms we didn’t understand), I’ve learned a lot. I’ve learned, for example, that most people know very little about PD.

And why would they, really? Unless they have Parkinson’s themselves, or know someone with Parkinson’s pretty well, what most people think they know is what they’ve seen in movies or on TV. But that information is either highly curated—meaning that we’re seeing only what someone wants us to see—or it’s simply incorrect. (Other than documentaries, films are fiction; they have no responsibility for presenting us with accurate information. Their job is to create dramatic effect. Sometimes it’s hard to keep that in mind.)

In addition to providing support for caregivers, one of my goals for The Middler is to help people understand PD a little better. So I’m taking a sideways turn in today’s post and presenting some information about the treatment and symptoms of Parkinson’s Disease. I’ve arranged the terms below in alphabetical order, just for the sake of making it easy to find a symptom or medication you might have questions about.

One thing to remember: there are 40 potential symptoms of PD. Not every patient experiences every symptom, and there’s no standard order in which they appear. So the fact that a friend or loved one hasn’t experienced a particular symptom means only that—nothing more.

Autonomic Dysfunction: Because Parkinson’s affects the way the brain communicates with the rest of the body, it can impact all the ways our bodies function automatically. That means it can interfere with regulating body temperature and blood pressure; digestion; swallowing; cardiovascular function; blinking; and anything else that “just happens” without the need to make it happen.

Bradykinesia: The medical term for slowed movement and stiff muscles. This was one of Mike’s first symptoms, although it was so subtle at first that we didn’t even notice he’d stopped swinging his right arm when he walked. Bradykinesia also explained why he was always lagging behind me, despite all the years I’d spent jogging at his side and doing my best to keep up with his long legs.

Carbidopa/Levodopa: The first medication most doctors prescribe for the treatment of Parkson’s tremors. Levodopa on its own causes nausea, so it’s always combined with carbidopa to alleviate that symptom. Nevertheless, a new prescription (or a change in dosage) is likely to cause some level of nausea, until the body adjusts. This medication has to be taken throughout the day to keep tremors under control.

Deep Brain Stimulation (DBS) Surgery: This has become a fairly common treatment for Parkinson’s tremors. It involves implanting an electrical device in the brain (similar to a pacemaker implanted in the heart) to regulate electrical impulses. Since some level of cognitive impairment can be created by the surgery, only patients who haven’t yet received a dementia diagnosis are eligible. Mike was going through the approval process for DBS surgery when we received his dementia diagnosis, which made him ineligible.

Donepezil: This medication was developed for treatment of Alzheimer’s symptoms, but our neurologist tells me it actually works better for Parkinson’s patients. It was a huge help to Mike after his diagnosis with Mild Cognitive Impairment (see below.)

Dystonia: Involuntary muscle contractions. If you’ve ever had the kind of foot cramp that results from pointing your toes for too long, you have some idea of what dystonia feels like. (Now imagine not being able to release those muscles voluntarily.)

Emotional lability: In general, lability is the medical term for something that can change quickly. Emotional lability refers to the quick changes of mood that can happen in a person with Parkinson’s. Many people with PD take antidepressant medication to help stabilize their mood and treat the depression and apathy that often arise as PD symptoms.

Executive Function: This describes the ability to plan, organize and execute activities—even something as simple as deciding what to have for dinner, or making a sandwich, becomes a challenge. Loss of executive function also leads to getting lost in familiar places, since it’s no longer possible to plan a path from one location to the next. This area of cognition can be impacted even in the earliest stages of Parkinson’s Disease.

Falls: Because Parkinson’s leads to issues with balance, falls are very common. Stiff muscles and slow reflexes in people with PD mean these falls are more likely to lead to broken bones or other serious injuries. Maintaining muscle tone is important for people with PD, but exercise can be challenging due to issues with balance.

Freezing: A temporary but involuntary loss of the ability to move. Some people describe this as feeling “stuck to the floor.” Freezing can happen anytime, but it most often happens when a person with PD is transitioning from one position to another (from sitting to standing, for instance), turning around to change direction, or in a stressful situation. People with PD who experience episodes of freezing are at a far greater risk for falls.

Hypomimia: Lack of facial expression. This makes it very difficult to know what a person with PD is thinking or feeling, what they want or need, what they do or don’t understand. The less technical term for hypomimia is “Parkinson’s masking.”

Lewy Bodies/Lewy Body Dementia: Lewy Bodies are clumps of a particular protein that begin to accumulate in the brain, interfering with its ability to send signals to the body. A person is diagnosed with Lewy Body Dementia when dementia symptoms appear first and physical symptoms resembling Parkinson’s appear later. (For this reason, LBD is simetimes mistaken for Alzheimer’s.) A diagnosis of Parkinson’s Disease means physical symptoms preceded dementia symptoms by at least one year—but those dementia symptoms are caused by the accumulation of Lewy Bodies in the brain. Not everyone diagnosed with Parkinson’s Disease will develop dementia, though it is a common symptom; that’s why these two diagnoses are maintained separately, despite the fact that most doctors agree they’re the same disease with different expressions.

Mild Cognitive Impairment (MCI): When you’re diagnosed with MCI after a round of neuropsych testing, this means your level of cognition is lower than what would be expected for a person of your age, education, and general health. Not everyone diagnosed with MCI will later be diagnosed with dementia; however, an MCI diagnosis does make a later dementia diagnosis more likely.

Orthostatic Hypotension: If you’ve ever tried to stand too quickly and found yourself dealing with a head rush, you’ve experienced a very brief moment of OH. For people with Parkinson’s, recovery from OH takes longer because their blood pressure drops farther and takes more time to rise to normal levels. OH is another common cause of falls in Parkinson’s patients.

Pill-Rolling Tremor: Imagine rolling a pill between your thumb and forefinger: this is the movement the fingers make in Parkinson’s tremors, bending and flexing without pause. These tremors occur while muscles are relaxed—for instance, when someone is sitting quietly with hands in their lap.

Proprioception: This term refers to awareness of the body’s position in space. Proprioception is the reason you can close your eyes and still touch a fingertip to your nose. It also tells us when we’re standing or sitting up straight, rather than leaning to one side. Many people with Parkinson’s begin to lean forward, left, or right as they lose this awareness and try to compensate for the lack of balance that develops as muscles weaken.

Reading/language skills: Word recall begins to decline as Parkinson’s continues its work on the brain. Reading skills also suffer, since they rely on working memory (see below.) People with PD may be able to read the words on a page, but their ability to understand and retain those words often begins to decline. This is one of the reasons why the dementia clock I purchased for Mike—which displays the date and day of the week, in addition to time—isn’t useful to him anymore.

SUDPAR: Sudden Unexplained Death in Parkinson’s. This condition isn’t well understood, but doctors suspect that autonomic dysfunction (see above) is the likely cause. There’s a lot of debate about whether it’s uncommon or simply underdiagnosed, though the consensus leans toward underdiagnosis.

UPDRS Score: The Unified Parkinson’s Disease Rating Scale is an assessment tool doctors use to measure the severity and progression of PD. A higher UPDRS score indicates more severe illness, so monitoring changes in that score is one way to “see” disease progression.

Working memory: When you’re at a restaurant and need to calculate how much to tip your server, you’re making use of working memory. It allows you to hold a piece of information in your mind (the total of your bill); manipulate it (calculate a percentage); and arrive at a conclusion (the tip.) Working memory is also what we use while reading. A novel, for instance, requires that we remember the names of characters; their relationships to each other; what events have already taken place up to a certain point; etc. If we meet John as a serial killer in Chapter 1, then see him pop up at a family reunion in Chapter 2, his reappearance is meaningful only because our working memory has held on to the details from Chapter 1. Working memory allows us to retain what we read long enough to make connections to new or existing information. It’s also one of the first areas of memory impacted by Parkinson’s.

If you’d like to suggest items to add to this list—or have questions about anything I’ve shared here—feel free to drop me a note in the comments.

All information in this post has been drawn from my experience with medical professionals or from The Michael J. Fox Foundation for Parkinson's Research and Parkinson's Foundation. If what you’ve read here contradicts something you’ve heard from a medical professional, listen to your doctor—or, if you don’t trust their assessment, seek a second opinion.