Lesser-Known Symptoms of Parkinson’s Disease

When Mike was first diagnosed with Parkinson’s Disease in 2018, I wasn’t sure what that meant. I understood that it explained the muscle tremor in his right hand; beyond that, however, I didn’t know what a Parkinson’s diagnosis meant. I’d always thought of PD as an illness that affected  elderly people, so I assumed its symptoms wouldn’t play a big role in our lives for quite some time.

The past few years have been a constant learning process. It turns out there are many symptoms of Parkinson’s Disease–tremor is just the most visible one. It makes sense, then, that this is the first thing people associate with PD. But being familiar with the lesser-known symptoms might make you a better friend to someone with Parkinson’s, or that person’s care partner.

Before we get into that list of symptoms, however, let me clear up a few common misconceptions about PD.

1. Parkinson’s is not usually genetic. 85% of the time, as in Mike’s case, there’s no family history of PD.
2. There is no test for Parkinson’s Disease. I watched a TV show recently in which this mythical test was given to the family members of a man diagnosed with PD, but that test does not exist in real life. (And even if it did, see Myth #1.) There is a test, the DaTscan, that can sometimes help in making a Parkinson’s diagnosis–but not always, and not definitively.
3. People don’t die from Parkinson’s. PD causes symptoms that can lead to death, like the inability to swallow–which is why many people with Parkinson’s die from choking or aspiration pneumonia. It also leads to problems with balance, which can cause falls, which can lead to serious injury and death. But PD itself is not a fatal illness.
4. Some people claim there are different “types” of Parkinson’s. In fact, there is only one disease that manifests in many different ways. One of the many things that makes PD difficult to understand is that it progresses at a different rate, through a different sequence of symptoms, for each patient. Right now, doctors have no idea why this is.

A tremor in the pinky finger is often the first sign of Parkinson’s. That’s the way it began for Mike. But most of the symptoms of PD are far less visible. The list below covers a few of the more common, if less well-known, symptoms of PD.

Exhaustion

Imagine pounding a hammer 24 hours a day and you’ll begin to understand why PD is so taxing. Mike’s body is never completely at rest, not even while he’s sleeping. Tremors never take a break. Meds can help to calm them for a few hours, but they always come back when the meds wear off.

People with PD often need to take naps during the day and go to bed early. Even so, their sleep is frequently interrupted by tremors. Melatonin sometimes helps with this.

Bradykinesia

Bradykinesia causes slow, stiff movement. The doctor who first diagnosed Mike pointed out that he wasn’t swinging his right arm when he walked, and he was dragging his right leg. But even before that diagnosis, I had noticed that Mike was walking much more slowly than usual. When we first met, I was always running to keep up with him–in part because he’s 9 inches taller than I am, but also because he was a fast walker. Now, I often have to slow down and wait for him to catch up with me.

Mike is also less facially expressive. Sometimes I think he’s being sarcastically super-serious, but most of the time he’s completely unaware of the blank expression on his face. This particular kind of stiffness is called hypomimia, or “facial masking.”

Changes in cognition

Many people with PD have difficulty coming up with words while they’re speaking. Loss of short-term memory and working memory–the kind you use when figuring the tip on a restaurant check, for instance–are also part of Parkinson’s. In some cases, these changes are simple enough to deal with: Mike makes a list of things that need to get done rather than relying on his memory, and we write appointments on a family calendar that stays in the kitchen.

But these cognitive changes are also the most frustrating part of PD, because lists don’t help when Mike doesn’t remember that he’s supposed to be referring to a list–or, for that matter, where he put the list. He frequently loses track of items, like his phone, because he can’t trace back to the last place he set it down. Calendar entries have to be very specific, because Mike can’t remember what they refer to. We’re still working at finding ways to deal with these challenges, and I’m pretty sure this will be the hardest part of the PD journey for us.

Changes in speech and voice 

Many people with Parkinson’s begin to speak in a softer tone of voice or slur their words. We recently learned that Mike’s left vocal cord is no longer working, so he’ll begin speech and swallow therapy to manage this new symptom. Vocal cords  help to seal off the airway and prevent food or liquids from “going down the wrong pipe,” making swallow therapy really important in keeping a PD patient safe and healthy.

Loss of smell

Strange as it sounds, many people with PD report an effect on their sense of smell. That’s because PD is a neurodegenerative disease, and all our senses rely on nerves. It’s hard to know how much Mike has been affected by this, but he no longer mentions smells–good or bad.  I assume that means his sense of smell isn’t what it used to be.

The best thing you can do to help a person with Parkinson’s, or the people who care for them, is to learn more about the disease. Most PD symptoms aren’t visible–and that makes them even more challenging to address.

You can donate to the search for a cure for Parkinson’s Disease at the Michael J. Fox Foundation for Parkinson’s Research.