Sure, you can watch celebrities like Alan Alda and Michael J. Fox talk about life with Parkinson’s disease. You can read medical articles and understand the definition of Parkinson’s, which is a neurodegenerative disorder that targets the neurons in the part of the brain that produce dopamine. This results in motor symptoms like tremor, rigid limbs, balance and gait problems and slowness of movement; and non-motor symptoms like sleep disorders and depression. But there are some things a textbook or doctor can’t tell you — like what it’s really like to live day in and day out with Parkinson’s.
When it comes to those details, only someone else who has Parkinson’s can give you that insider knowledge. If you’re newly diagnosed, they can tell you what to prepare for, and if you’ve been living with Parkinson’s for a while, they can tell you that you’re actually not the only one experiencing that “weird” symptom. So we asked our Mighty Parkinson’s community to share something people don’t tend to understand about Parkinson’s unless they have it themselves. Check out the “secrets” they shared below. Did we miss anything? Be sure to leave a comment and explain what you would add to our list.
1. It can be frustrating not being able to do small things.
The tremors, bradykinesia (slowness of movement) and rigidity caused by Parkinson’s can make doing things requiring fine motor skills difficult. For example, you might have trouble buttoning a shirt or cutting a sandwich.
Ellie Finch Hulme, blogger at PD Mama, explained:
How frustrating it is not being able to do the smallest of things, despite willing your brain to send the right message and have the right limb, for example, receive that message and act upon it. Things as simple as moving fingers to type. Things that we take for granted in our everyday lives.
2. Tremors are not always visible — they can be internal, too.
“People who do not have Parkinson’s do not understand what internal tremors are,” Sharon Krischer, blogger at Twitchy Woman, said.
Most people are aware that external tremors are a hallmark sign of Parkinson’s, but what many people don’t know is that tremors can also be internal. This feels like a shaking sensation inside the body.
3. Women with Parkinson’s disease may present with different symptoms and challenges than men.
For women, hormones can impact Parkinson’s and vice versa — you might notice worsening Parkinson’s symptoms, heavier menstrual flow, more fatigue and less effectiveness of medications while you have your period. Some research has also suggested that during the “preclinical” phase of Parkinson’s, or period of time before a doctor’s diagnosis, women’s non-motor symptoms may be more prominent than their motor symptoms, meaning they may get diagnosed later than men do.
Maria De Leon, blogger at Parkinson’s Diva, shared:
Unless you are a young woman with PD, you don’t realize the impact that having hormone fluctuations play on the symptoms of the disease, while PD itself [can] worsen the menstrual cycle and other hormonal related medical problems like migraines. [Also], how young women with PD take longer to get a diagnosis because of the prevalent non-motor symptoms at presentation compared to their male counterparts.
4. Parkinson’s symptoms are not necessarily the same every single day.
Like most chronic illnesses, Parkinson’s disease does not look exactly the same every day. One day you might feel more fatigue; another day you might realize you’re not moving as slowly as you were the previous week. If you experience these “ups and downs,” you’re definitely not alone!
Blogger Linda Olson explained:
Parkinson’s disease is an erratic partner of mine. Some days I’m stiff and sore and anxious, on those days my mantra is, ‘I can do this.’ Then for no reason at all, it lightens up for a while. I look forward to these ‘gratitude days’ and make sure I share them with those around me.
5. Depression sometimes comes even before other symptoms.
Not everyone with depression will get Parkinson’s and vice versa, but it is common for depression to be among the very first symptoms of the disease to show up.
Sherri Woodbridge, blogger at Parkinson’s Journey, explained how this depression feels:
One of the first symptoms that is often overlooked (while Parkinson’s is frantically trying to make its mark on your life) can be depression. By the time you are actually diagnosed, you may feel like your whole world has caved in and your diagnosis adds a thousand ton weight upon you as you lay smothered in a pit of grief.