A patient of mine — I’ll call him Frank — fell in his driveway last spring. Within a week he had a physical therapy referral in hand, a fall-risk assessment scheduled, and a home exercise plan taped to his refrigerator. It took another eighteen months, and a swallowing scare when out with friends at dinner, before anyone in his care team thought to ask about his swallowing.
Frank’s story isn’t unusual. It’s the pattern.
Motor symptoms — tremor, stiffness, slowness of movement — are usually the first signs of Parkinson’s disease clinicians and families notice, so it makes sense that falls and balance problems trigger a PT referral fast. But speech and swallowing changes creep in quietly, and by the time they’re impossible to ignore, they’ve often been building for years.
The numbers back this up. A study in the Journal of Parkinson’s Disease tracked real-world referral patterns across hundreds of thousands of patients and found that most referrals go to a single service — usually in reaction to a fall or to advancing disease, rather than as part of a proactive, multidisciplinary plan. (i) Within the first two years of diagnosis, only 36.9% of patients received physical or occupational therapy. Speech-language pathology lagged dramatically further behind: historic tracking shows fewer than 12% to 14% of patients logged a speech therapy claim in that same window — even as PT utilization climbed steadily, about 1.4% year-over-year. (ii)
The scales we use don’t help. The Unified Parkinson’s Disease Rating Scale (UPDRS) and the Hoehn and Yahr Scale are the two most widely used tools for staging Parkinson’s progression, and both are genuinely useful for tracking motor symptoms. But they weren’t built with much sensitivity to speech and swallowing. A patient can be dealing with real, disruptive dysarthria or dysphagia — symptoms that affect up to 80–90% of people with Parkinson’s, and that carry a real risk of aspiration pneumonia and hospitalization — and still land in “Stage 2” on these scales, simply because their walking and balance are holding steady. The scale isn’t wrong; it’s just not designed to catch what speech therapy is designed to treat. That mismatch is a big part of why referrals lag.
So why does speech get missed? In my clinical experience, a few things are almost always at play:
- Patients often can’t hear the problem themselves. Parkinson’s changes how the brain perceives vocal loudness, so patients frequently feel like they’re speaking normally — even shouting — when their voice has actually become very soft.
- The changes are gradual. A breathy tone, hoarseness, or a flattening pitch develop slowly enough that patients and families adjust without ever naming it as something to treat.
- The logistics are real barriers. Intensive speech therapy protocols, like intensive PT, often call for multiple visits a week for several weeks — and transportation, copays, deductibles, and insurance visit limits can make that feel out of reach.
- Something has to give. When a patient is already managing home exercises for balance and mobility, speech often loses out — especially when falls are the thing getting reported, and swallowing or voice concerns go unmentioned.
What would actually move the needle:
- Routine screening at every visit. Neurologists and primary care physicians are well positioned to ask about soft speech (hypophonia), monotone voice, imprecise articulation, or subtle swallowing red flags — coughing during meals, meals that take much longer than they used to. In my own practice, I rely on the VHI-10 (Voice Handicap Index) and the EAT-10 (Eating Assessment Tool) as quick, validated screens.
- Referral to speech-language pathology at diagnosis — not after a crisis. A baseline evaluation of speech, cognitive-linguistic function, and swallowing gives us something to measure against, and lets us fold strategies into daily life early, while they’re easiest to build as habits.
- Instrumental testing when swallowing is in question. A Videofluoroscopic Swallowing Study (VFSS) or Fiberoptic Endoscopic Evaluation of Swallowing (FEES) can catch silent aspiration and pinpoint exactly where the mechanics are breaking down — which also gives patients a concrete reason to trust the exercises we’re asking them to do.
Frank is doing well now. But I think about the eighteen months we lost, and how differently that swallowing scare might have gone if someone had asked the right question a year earlier.
Have you or someone you love experienced this same lag between a Parkinson’s diagnosis and a referral to speech therapy? I’d love to hear about it in the comments.
References (i) Roberts A, Rafferty M, et al. Patterns and predictors of referrals to allied health services for individuals with Parkinson’s disease: A Parkinson’s Foundation (PF) QII study. Parkinsonism & Related Disorders, 2020; 83, 115–122. (ii) Dahodwala, N., et al. (2025). Longitudinal Study of Treatment Variability for Parkinson’s Disease across Specialized Centers. Mov Disord Clin Pract, 12: 2207–2216. https://doi.org/10.1002/mdc3.70232
Sing, connect, and thrive!
The Off-Key Chorale brings together people with Parkinson’s, their families, caregivers, and volunteers to sing and build community. Created by Joseph Caulkins, Key Chorale Artistic Director, the program offers live musical accompaniment while helping participants strengthen their voices and enjoy fellowship. A FREE program open to the Parkinson’s community in Charlotte, Sarasota, and Manatee Counties in Florida
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My Mission: To enlist individuals in their treatment, and help them express their personality & spirit through voice. To educate and empower. Mary Spremulli, MA, CCC-SLP * FiTOUR® Group Exercise Instructor * Certified End of Life Specialist (CEOLS) * Voice Aerobics® A Whole Body Approach to Voice Practice Voice Aerobics the heART and Science of Voice Practice