11 Things I Wish I’d Known When I Was Diagnosed With Parkinson’s

Actor Michael J. Fox, now 61, has had Parkinson’s disease (PD) for 30 years. At first, he says he was like most newly diagnosed people: He didn’t know what to expect from a condition that targets nerve cells in the brain and causes problems with walking, cognitive function, and balance. So, what would he tell his younger self now? “It’s going to be great—you’re going to have a great life,” despite the challenges, he told USA Today. Here’s what five other people say they wished they’d known, from the practical to the inspirational, after first being diagnosed with this neurological disorder.

It’s a Whole-Body Disease

Karen Purcell, 56, who lives on the gulf coast of Alabama, has had PD for six years. Her symptoms include tremors and muscle rigidity (“I feel like the Tin Man in the Wizard of Oz sometimes,” she says), but also gastroparesis—her digestive system slowed down so much that she had trouble absorbing nutrients and had frequent stomach pains. She kept losing weight until she ended up with a feeding tube. Her doctors at the time couldn’t figure out why she was dropping so many pounds, yet gastroparesis and other GI issues are common in Parkinson’s, according to research.

Find a Parkinson’s Specialist

Purcell was paired with a neurologist who specializes in PD in the hospital after her dramatic weight loss. “[This doctor] understood me before she ever laid eyes on me, just from reading my files,” she recalls. The specialist scrutinized Purcell’s seemingly random symptoms and immediately connected her GI issues to nerve cell damage in the brain and gut that’s caused by Parkinson’s. Then she switched Purcell’s medications and recommended deep brain stimulation (DBS) surgery, which Purcell had in 2021, to improve all her symptoms.

Tell People You Have PD

Denise Coley, 70, of Morgan Hill, CA, was diagnosed in 2018. As a woman of color, she hesitated to share the news, worried she’d lose consulting opportunities and be seen as less independent. She attended a Parkinson’s Foundation Research Advocates training program and learned how she wasn’t an “island. “That’s when I got the courage. If I don’t get out there, there won’t be people who look like me helping others across that barrier. Someone has to do it, or we’re all not going to be included,” she says. Her advice: Tell your loved ones.

Spotting Symptoms Early Is Key

Coley admits that she dismissed her early one-off symptoms, including insomnia and balance issues, for 10 years, blaming menopause and knee injuries she’d suffered from running marathons. She saw doctors for each symptom, but none considered Parkinson’s disease until tremors sent her to a neurologist. “There needs to be more awareness of the early signs of Parkinson’s, both motor and non-motor,” she says, including constipation, loss of smell, and the inability to swing your arms, per the Parkinson’s Foundation. “The earlier you’re diagnosed, the better off you are going to be with information on how to help yourself,” she adds.

Bring Your Partner Along for the Journey

If you possibly can, bring your significant other or a friend to most of your appointments, urges Coley, whose husband goes to hers. During the initial diagnosis, that person can provide support and absorb the information that you might be too shell-shocked to hear. During other visits, your care partner may have a different take on your symptoms or medication side effects than you do, which can be important for a doctor to know, she notes. Your care partner can also hold you accountable in terms of sleep, exercise, hydration, and diet.

Take Control of Your Doctor Appointments

“Because doctors’ visits are so quick, they pretty much control the dialogue,” says Benjamin B.J. Bement, 52, of Baton Rouge, LA, who was diagnosed in 2013. It wasn’t until he connected with a patient advocate that he learned how to speak up. A couple of days before his neurological appointments, they’d go through his symptoms together, then review any questions and issues he might have, writing it all down. That helped him learn how to get everything out in the open from the get-go, so he’s the one talking to the doctor about his concerns, not the other way around.

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11 Things I Wish I’d Known When I Was Diagnosed With Parkinson’s

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