MARCH 11, 2019
The full gamut of symptoms Parkinson’s disease can cause doesn’t typically arrive all at once. If you have Parkinson’s disease, you likely first noticed a mild symptom or two, and thought, “Huh… what’s that all about?” Though Parkinson’s is often thought of as mainly affecting older people, the disease can arise at younger ages, too, and it can involve more than just tremoring, the symptom people tend to be most familiar with. Parkinson’s is a neurodegenerative disorder that targets dopamine-producing neurons in a part of the brain that affects movement, causing symptoms like rigid limbs, gait problems and tremors.
There is no single “Parkinson’s test” you can take to diagnose the disease; rather, doctors will look for a few classic symptoms and their progression over time. But how do you know if your initial symptoms warrant an exploration into the possibility of Parkinson’s disease? To help answer that question, we asked our Parkinson’s disease community to share the symptom they noticed first.
Remember that when it comes to chronic illnesses, symptoms of one condition can overlap with another. If you’re considering Parkinson’s as a possible diagnosis, be sure to check with a doctor, so you can rule out any other possible causes.
1. Loss of Balance
Parkinson’s disease targets a part of the brain that controls balance automatically, so you may notice you are finding it more difficult to balance. The brain will try to compensate by assigning balance to another part of the brain — the “thinking” part. However, this isn’t as effective, so you may start to notice that you can’t correct yourself when you start to fall and you have to concentrate on balancing, whereas a person without Parkinson’s doesn’t have to think about it.
Matt Eagles, who first began experiencing symptoms at the age of 7, said loss of balance was one of the first things he noticed.
“I was provided with a chair during school assembly, when everyone else had to stand,” he said.
2. Hand Tremor
A hallmark symptom of Parkinson’s is tremoring (though it’s important to note that not everyone with Parkinson’s experiences this). You might notice that your hand, finger or chin shakes while you are not trying to move. Tremors from Parkinson’s can be mistaken for essential tremor and vice versa, though they are two separate conditions. Essential tremor does not include balance and gait issues, and more commonly manifests while a person is moving. However, some people with Parkinson’s experience tremors both at rest and while moving.
“In my case, the first sign was my hand trembling while carrying my plate at a lunch meeting. Soon after I was diagnosed with essential tremor in 1992, 16 years before my PD diagnosis. A neurologist assured me I did not have PD after an exam. It is now thought that in some cases ET evolves into PD for reasons that are unclear,” Kirk Hall explained. “In hindsight, I also experienced some cognitive and swallowing issues in the next few years following my ET diagnosis.”
3. Difficulty Gripping Things
The movement issues caused by Parkinson’s can make fine motor skills difficult. Nicola Lee said while she had been having symptoms like feeling weak and losing energy easily for several months, it wasn’t until she began having trouble buttoning and unbuttoning that she began to get worried.
“It wasn’t just buttons either. I couldn’t grip things well. I had trouble picking things off the floor, which was bad for laundry… None of this was due to tremors, mind you,” Lee said. “Most people think everyone has to have a tremor. I learned that wasn’t the case, especially for early diagnosis like I have. There is much more to it [than] that.”
4. Acting Out Dreams
Actor Alan Alda said he was diagnosed four years ago after he read an article about how acting out dreams was a sign of the disease. Indeed, research has shown that almost all people with rapid eye movement sleep behavior disorder (RBD), the condition responsible for acting out dreams, go on to develop Parkinson’s disease or a similar disorder. RBD is believed to be caused by a brain stem malfunction that allows people to move in their sleep, possibly due to the breakdown of proteins in the brain that causes Parkinson’s disease.
“I was having a dream that someone was attacking me and I threw a sack of potatoes at them. But what I was really doing was throwing a pillow at my wife,” Alda said.
5. Illegible Handwriting
One classic symptom of Parkinson’s is handwriting that becomes harder to read or very small, called micrographia. As you might imagine, the movement challenges caused by Parkinson’s can make it difficult to hold a pen and write.
“When I told my primary care physician that my handwriting was becoming illegible, she told me to see a neurologist,” Jean Mellano said. “Other strange things started to happen that I could not explain. While volunteering at a race, I was rolling posters for athlete giveaways. I could not understand why the other staff could roll five posters to my one. Why was I so slow at performing such a simple task?”
Fatigue is a common symptom of Parkinson’s disease, and typically shows up in the first few years of the disease, even possibly before motor symptoms. Fatigue is not the same as being tired — it is the feeling of having no energy or ability to move, but cannot be solved with a good night’s sleep. Fatigue is also often coupled with a lack of motivation, also a common symptom of Parkinson’s due to the loss of dopamine-producing cells.
“Deep fatigue involves every muscle, sometimes even involuntary ones. They are all tired and weak, and in my case, also in pain,” Dr. C. wrote on Parkinson’s News Today. “At the same time, emotions become much more intense, almost overwhelming, and difficult to manage. Mental energy is used to manage the pain and the emotions, leaving little energy for anything else.”
7. Voice Changes
Many people with Parkinson’s notice that their voice has become softer, slower and more monotone. This is due to weakening of the muscles required for speech and greater difficulty controlling the muscles. Another similar symptom is facial “masking,” or a loss of facial expressions.
Singer Linda Ronstadt said the symptom she experienced that began worrying her was her gradual inability to sing.
“I’d start to sing and then it would just clamp up. It was, like, a cramp. My voice would freeze,” Ronstadt said. “And I said, ‘There’s something wrong with my voice.’ And people would say, ‘Oh, you’re just a perfectionist.’ I go, ‘No, there’s really something systemically wrong.’”
If you’re exploring a possible Parkinson’s diagnosis or newly diagnosed, there’s a community here on The Mighty to support you. Click here to ask questions and share what you’re going through.
For guidance on living with Parkinson’s, check out advice from other “Parkies”: