Parkinson’s disease can seem rather mysterious. For starters, it’s hard to diagnose, since the only way to be certain someone had it is to physically examine her brain after death. And even once you’re told that you have it, your prognosis will probably be murky, because it impacts everyone differently. Meanwhile, friends and loved ones may have a hard time understanding why your posture, expressions, or even emotions seem to be changing. That said there are some things experts definitely know about the disease. Here are 6 you should know.
It’s one type of movement disorder
Others include essential tremor, restless legs syndrome, and Huntington’s disease. Parkinson’s is somewhat common, as it impacts about 13 out of 100,000 people, according to the National Library of Medicine. Since it’s usually diagnosed after age 50, rates are expected to increase as people are living longer.
It happens when dopamine-producing cells get damaged
In a healthy brain, the nerve cells (neurons) that help you move around make a chemical called dopamine. Dopamine acts as a messenger, sending signals from one section of the brain to another. In people with Parkinson’s, those neurons get damaged or die off, so you end up with a shortage of dopamine — and the normal pattern of messages gets disrupted. As a result, you can no longer move around smoothly.
It’s more than tremors
When most people hear about Parkinson’s, they automatically picture shaky hands. But there’s far more to this illness, says Steven Schechter, MD, coauthor of Understanding Parkinson’s Disease. “While Parkinson’s disease definitely causes motor symptoms such as tremor, rigidity, and slowness of movements, there are some non-motor symptoms that may occur as well. These might include loss of smell and constipation, as well as dryness of skin and even cognitive loss.” Schechter also notes that Parkinson’s patients have a higher risk of skin cancer and should be screened regularly.
About 30 to 40% of people with Parkinson’s also battle depression (compared to about 6.7% in the general population), according to a 2009 study. “There’s still a lot of stigma, and you lose work, friends, dignity, balance, driving, and more,” says Pamela Atwood, a gerontologist and Director of Dementia Services at Hebrew Healthcare in Connecticut. She adds that many patients are crippled by the fear that they’ll lose their independence and become wheelchair-bound. “These fears can be substantially lessened with information from support groups,” she says.
Fighting back physically can help
Research has shown that exercise helps people with Parkinson’s feel better and improves their gait, balance, and coordination. It often has emotional benefits, too. After Judy George was diagnosed with Parkinson’s about 10 years ago, “I cried. I came home and threw myself on the bed and cried some more, and really didn’t want to get out of bed for a couple of days,” she says. “It took me a good couple of years to get over the grief.” But then she heard of a boxing program designed to help people living with Parkinson’s at her local TITLE Boxing Club. “I can’t live without it,” she says. “I feel stronger. I’m definitely benefiting from it physically and emotionally. There’s no question.”
It’s not fatal
Parkinson’s disease itself won’t kill you, though it does sometimes lead to complications —like trouble swallowing and dementia — that can be fatal. “This is not a death sentence,” says David LeMaster, PhD, a novelist and college professor who developed early-onset Parkinson’s in his 40s. “I plan to continue writing, even after the shaking keeps me from typing and after the disease robs me of the ability to speak. I will fight with every part of my body. [Parkinson’s] is a hindrance, but we all have obstacles in our lives. It is what I’m dealing with, and is part of me, but it is not a tragic situation.”