What does it take to go from hiding a diagnosis in silence, popping pills in secret, withdrawing from the world — to becoming one of Ireland’s most visible advocates for Parkinson’s awareness? For Gary Boyle, it started with a simple, persistent nudge from the person sitting beside him: “Speak up.”
In this episode of Think BIG and LOUD, LSVT Global’s podcast, host Beth Peterson sits down with Gary who was diagnosed with young onset Parkinson’s disease at age 44, and his wife Joan Duffy, a speech and language therapist and certified LSVT LOUD® clinician. Together, they offer a rare window into what it looks like to navigate Parkinson’s from both sides: as a person living with the condition, and as a care partner with a professional stake in the treatment.
I was given this diagnosis and I had to decide what I was going to do. At the start, I just buried my head in the sand.— GARY BOYLE
THE DIAGNOSIS
A Life Interrupted — at 44
Gary was working a demanding, travel-heavy role as Salaries and Benefits Manager for Europe at Intel Corporation when he first noticed something was off. His right arm felt stiff. A foot had started dragging. He chalked it up to needing physio. It wasn’t until a consultant’s visit on September 3rd, 2009, that everything changed.
“He twisted my hands, moved my arms in and out and said, ‘Oh yeah, no doubt, you’ve got young onset Parkinson’s. But don’t worry, it won’t kill you.'”
Gary drove home, somehow, and told Joan. They sat together, stunned. “We just said, that’s mad. That’s crazy. This is wrong.” His consultant’s matter-of-fact delivery left little room for the emotional weight of what had just happened. It’s a moment Gary carries with him into his advocacy work to this day.
For the next several years, Gary did what many people do: he took the medication, told almost no one, and pushed on. He was embarrassed taking his pills at work, the blister packs betraying him at colleagues’ desks. He was exhausted spending enormous energy ensuring nobody treated him differently. And quietly, his voice was fading.
THE TURNING POINT
“Speak Up” — Joan’s Gentle, Persistent Push
Joan noticed it before Gary did. She was close enough to hear him clearly, but she knew that without her proximity in a meeting, across a room, in a conversation with someone else, he was increasingly inaudible. She told him plainly: “Your voice is fading.”
Joan has a gift, Gary says, for gently reframing difficult truths. “She has a really good way of gently telling you to change your behavior, because if you don’t, it’ll change you.”
In 2015, Gary enrolled in LSVT LOUD, the evidence-based intensive voice treatment programme for people with Parkinson’s and other neurological conditions. Ironically, he was placed in a group run by one of Joan’s colleagues, Ruth. The first session was revelatory. Ruth placed a voice level meter between them as they chatted, then read back their respective decibel scores. Gary’s hovered in the high 20s. Ruth’s, speaking in a perfectly normal conversational tone, were in the mid-to-high 40s.
She wasn’t shouting. She was talking normally. And I thought — that’s interesting. What am I going to do about this?— GARY BOYLE
What followed was four weeks of intensive sessions, daily exercises, and carefully chosen phrases to practice, things that were meaningful enough to Gary that he’d actually keep doing them. By the end, his voice was louder. More than that, something had shifted.
Joan describes watching Gary go from “center of every conversation” to someone who wouldn’t leave the house, and then, after LSVT LOUD, gradually re-entering life. “He went from one extreme to the other,” she says, laughing. From “nobody needs to know about this” to writing letters, speaking on radio, appearing on television. “He fully embraced it and felt: people need to know about this.”
JOAN’S PERSPECTIVE
The Clinician Who Was Also the Wife
At the time of Gary’s diagnosis, Joan’s practice was primarily pediatric. She had to educate herself, reaching out to colleagues in the adult team, reading up on Parkinson’s, learning what therapies existed. When Gary started LSVT LOUD, she watched closely. And felt strongly she wanted to do more.
In 2016, “right on the brink of Brexit,” she notes, she traveled to London to complete her LSVT LOUD certification. It was unlike any course she’d ever attended.
“Having attended so many courses over the years as a speech and language therapist, to go into a room as a partner, as a spouse, is a very different thing. Everything I was learning I was referencing back to personal experience. I was thinking about Gary.”
Returning home, she approached her manager and was given time to work with people living with Parkinson’s in her area. She brought a different lens to each session, noting medication timing, understanding how a person’s day might be going before the session began, drawing on lived experience in ways her training alone could never have provided.
Today, Joan works in private practice, specialising in LSVT LOUD alongside stammering. She describes the privilege of seeing firsthand what long-term commitment to voice therapy can do, she watches it in Gary every week.
THE THERAPY ITSELF
On Intensity — and Why It Matters
LSVT LOUD is notably intensive: four sessions per week, for four weeks, one hour each. That’s 16 sessions total. Both Gary and Joan are candid about what that demands, and why they believe it works.
Joan explains that as a clinician, she makes the intensity of the commitment clear upfront. “This is the intensity of it. You have to think about that before you commit. You need to be able to do those 16 sessions.” Within the public health system in Ireland, long waiting lists make that structure a harder case to make to management, but she sees the cumulative, snowballing effect of seeing someone four days a week as essential.
“By the time you get to the last week, people are surprising themselves. You play back the passage recorded in week one and they listen to it and go ‘Oh my goodness.’ And they tend to be terribly critical of themselves at first. But there is a real, measurable difference in four weeks.”
Gary adds a crucial point about the ongoing nature of the work: for people with neurological conditions, stop-start therapy models don’t serve as well as continuous, lower-intensity maintenance. “Parkinson’s doesn’t take a break,” he says. Learning a skill through intensive therapy and then maintaining it through group sessions, daily exercises, LOUD for LiFE classes, is the model he advocates for.
What LSVT LOUD Involves
- 16 individual sessions over 4 weeks (4 sessions/week, 1 hour each)
- Daily home exercises throughout the programme
- Personalised phrases chosen for meaning and daily use
- Voice level measurement to track progress objectively
- Individual intermittent tune-up sessions after treatment
- LOUD for LIFE maintenance classes (optional but recommended)
- Family support encouraged throughout
LOOKING FORWARD
Advocacy, Access, and What Needs to Change
More than a decade after his diagnosis, Gary is a visible advocate for Parkinson’s Europe, for early onset Parkinson’s disease in Ireland, for multi-disciplinary care models, and for the simple idea that a diagnosis is a starting point, not a sentence. He dances, he walks 10–12,000 steps a day, he goes to LOUD for LIFE classes every Friday.
But he and Joan are clear-eyed about what still needs to change. Joan describes still hearing stories from people who received their diagnosis and nothing else, no referral, no brochure, no direction. “That surprises me. It still surprises me. People are told they have Parkinson’s and then nothing.”
What they want to see: automatic referrals to multi-disciplinary teams upon diagnosis. Access to speech therapy, physiotherapy, occupational therapy, dietetics, social support, dancing, all of it, from the beginning. A model that treats the whole person and empowers them to take ownership of their care.
I would love to see every person who gets a diagnosis getting an automatic referral to a therapist. In an ideal world, an interdisciplinary response from day one.— JOAN DUFFY
Gary’s message to anyone newly diagnosed, particularly with young onset Parkinson’s, is direct: there is hope. Real, evidence-based, actionable hope. “You own this yourself. Not in a negative way, but you can do this. You can learn these skills and have them for life.”
And for care partners, Joan offers this: Parkinson’s is one thread in the fabric of a life. Don’t let it swallow the rest. Go to the movies. Meet friends. Embrace self-compassion on the hard days. And reach out — because nobody should carry this alone.
Listen to the full episode of Think BIG and LOUD wherever you get your podcasts. Resources mentioned in this episode, including links to EOPD Ireland, Parkinson’s Europe, Parkinson’s Ireland, and IASLT, are available in the show notes.
AI (Claude) assisted in the translation of this content from a podcast to a blog, edited by humans of course.