Seeing Both Sides: What It Means To Treat Parkinson’s While Living With It

Speech-language pathologist Amy Chrest, MA, CCC-SLP, was diagnosed with young onset Parkinson’s disease at 48. Nine years later, she’s still practicing, and still learning what her patients have been trying to tell her all along.

Amy Chrest has spent more than 30 years as a speech-language pathologist, much of it working with people who have Parkinson’s disease. Nine years ago, she became one of them. In this episode of Think BIG and LOUD, she talks with host Beth Peterson about what changes when the clinician is also the patient, and what she wishes every provider understood about the disease hiding beneath the surface.

A nine-year road to diagnosis

Amy’s first symptoms showed up around age 39, nearly a decade before she was formally diagnosed with young onset Parkinson’s disease (YOPD) at 48. It started with sudden, uncharacteristic anxiety, which her doctors initially chalked up to perimenopause and the stress of a busy working mom. As a speech-language pathologist who had spent her career working with Parkinson’s patients, Amy recognized pieces of the picture long before anyone else did: muscle cramping, early swallowing changes, a voice that was starting to sound different, and eventually a hand that curled involuntarily behind her back, a dystonic posture she nicknamed her “Spider-Man hand.”

She points to something many people don’t realize: by the time a Parkinson’s diagnosis is made, most people have already lost 60 to 80 percent of their dopamine-producing cells. Women, she notes, also tend to wait longer for a diagnosis than men do. Her own path even ran briefly through a terrifying misdiagnosis of parkinsonism, which can signal far more aggressive conditions, before a movement disorder specialist confirmed it was, as she put it, “garden variety” young onset Parkinson’s.

When the clinician becomes the patient

Amy described a staff meeting where the dual identity of clinician and patient became impossible to ignore. Sitting in the back of the room, she raised her hand to ask a presenter a question and immediately felt the specific anxiety her own patients describe: worrying whether her voice would carry, whether she’d be too loud or not loud enough, and whether her colleagues were quietly noticing. It was a small moment, but it gave her a visceral understanding of what she’d been coaching patients through for years.

That same collision showed up again during her own neuropsychological evaluation. Sitting on the testing side of the table for the first time in her career, she recognized her own deficits before the results came back: executive function decline, working memory retrieval issues, and moments of disorientation in familiar places. One assessment, the trail-making test, hit hard enough that she teared up before she even started, because it targeted the exact skill she’d noticed slipping.

Young onset Parkinson’s is not the same disease

Much of the conversation focused on how young onset Parkinson’s, diagnosed before age 50, differs from the more typical presentation seen at 65 and older. Amy walked through several distinctions clinicians should keep in mind:

HOW YOPD OFTEN DIFFERS FROM LATER-ONSET PD

• Swallowing difficulty and aspiration risk tend to appear later in YOPD, without the added complication of age-related, vascular-driven swallowing decline.
• Dementia is less common early on in YOPD and, when it occurs, tends to emerge much further into the disease course.
• People with YOPD are more prone to dystonia and to dyskinesia, the involuntary dance-like movements that come as a side effect of long-term levodopa use rather than the disease itself.
• A meaningful share of YOPD cases have a genetic component, which is part of why Amy participates in gene-mapping research initiatives.

She was careful to underline that these are patterns, not rules. Her own dysphagia symptoms actually emerged earlier than the typical YOPD trajectory would predict, which is exactly why she urges clinicians to listen to the individual in front of them rather than the population average.

The symptoms nobody sees

Amy used the classic iceberg image: rigidity, slowness, tremor, and balance problems sit above the waterline where clinicians can observe them directly. Underneath are the non-motor symptoms: insomnia, orthostatic hypotension, constipation, and a trio of mood effects she wants providers to distinguish carefully, namely depression, anxiety, and apathy. Apathy in particular gets misread, she explained, because it isn’t sadness. It’s a dampened drive that can look like disinterest in therapy or in exercise, even when the person genuinely wants to engage.

Facial masking compounds the problem. Amy described consciously smiling on purpose, not out of dishonesty but because reduced facial expressiveness has led strangers to assume she’s angry or upset when she isn’t. For clinicians, she suggested treating a flat affect in session as a possible symptom rather than a sign of disengagement.

Choosing when, and whether, to disclose

Amy waited seven years after her diagnosis before telling her employer and colleagues, largely out of concern about stigma. When she finally did, she described it as an enormous weight lifting. With her own patients, though, she generally chooses not to disclose her diagnosis at all, wanting every session to stay focused entirely on them rather than shifting into shared-diagnosis territory. She’s made rare exceptions, including with a former patient who returned months later to thank her; when she told him about her own diagnosis, his reaction reinforced why she leads with her son’s phrase: sharing stories builds community.

Her broader message to anyone newly diagnosed is that disclosure timing is entirely personal, and there’s no single right answer for when, or whether, to share it with an employer, colleagues, or extended family.

Research, advocacy, and passing the torch

Since her diagnosis, Amy has become a research advocate with the Parkinson’s Foundation, participated in a phase two clinical trial, and joined efforts pushing for greater research funding and representation of women in Parkinson’s studies, including a Capitol Hill policy forum tied to the National Parkinson’s Plan signed into law in 2024. She also described attending the Michael J. Fox Foundation’s first social media summit for patient advocates, where Fox himself thanked the group for their openness. Amy connected his account of his mother’s fear for him to her own mother’s reaction to her diagnosis, a moment that clearly still resonates with her.

For listeners looking to get involved, Amy pointed to a few accessible entry points: the Parkinson’s Foundation’s free genetic testing program, PD Generation; the Michael J. Fox Foundation’s online smell test, open to people without Parkinson’s as well; and PPMI, a long-running study tracking symptom progression through quarterly surveys.

Her message to clinicians

Asked what she wants healthcare providers to take away from her story, Amy circled back to two things. First, that Parkinson’s is hard, physically, cognitively, and emotionally, and providers should know that even a quiet, flat-affect patient sitting in their chair represents meaningful, valued work. Second, that the patient in front of them is always the expert on their own body, even when their symptoms don’t match the textbook timeline.

Listen to the full conversation

This recap only scratches the surface. Hear Amy Chrest’s full story, including more on clinical trial participation, DBS considerations, and her advice to the newly diagnosed, on the Think BIG and LOUD podcast.

Think BIG and LOUD is produced by LSVT Global. Theme music, “Think Loud for Parkinson’s,” by Kindred Spirit and Leo Sayer, was created for LSVT Loud speech treatment, with proceeds benefiting Cure Parkinson’s UK.

AI (Claude) assisted in the translation of this content from a podcast to a blog, edited by humans of course.