Patricia Williams

Patricia Williams was sixty-eight when she received her Parkinson's disease diagnosis, though in retrospect she had been noticing the signs for two years before that — a slight tremor in her right hand when she rested it in her lap, a change in her handwriting, a stiffness in her shoulder that physiotherapy had failed to improve. The diagnosis itself came as both a shock and, perversely, a relief: a name for what had been quietly disrupting her life. She was referred to the movement disorder service at Silvaris Neuroscience Center in St Louis, where she began a relationship with a specialist team that she describes as transformative.

Her neurologist took a detailed history of her motor and non-motor symptoms, assessed her gait, balance, and fine motor function, and reviewed her existing medication regimen. The levodopa she was taking was providing benefit, but it had begun to wear off before the next dose was due, leaving her with periods of significant stiffness and slowness, and her afternoon doses were producing involuntary movements that were at times embarrassing and disruptive. Her neurologist proposed a structured medication optimisation — adjusting dose timing and adding a COMT inhibitor to extend the action of each dose — explaining what to expect and how long it would take for the new regimen to settle. 'He gave me a timeline,' Patricia says. 'He told me it might take three months to fully optimise. That helped me understand the process was iterative, not instant.'

Alongside the medication review, Patricia was referred to a Parkinson's specialist physiotherapist who carried out a comprehensive assessment of her balance, gait, and risk of falls. A personalised exercise programme was designed for her, incorporating evidence-based approaches including boxing fitness classes specifically adapted for Parkinson's patients — something Patricia initially found faintly absurd and now describes as the highlight of her week. Occupational therapy assessed her home and recommended a series of adaptations that improved her safety and independence, including grab rails in the bathroom and a perching stool in the kitchen. 'I didn't realise how much I had been compensating,' she says. 'The OT saw it immediately.'

The Parkinson's nurse specialist became the hub of Patricia's care — the person she called when the medication changes unsettled things, when a fall frightened her, when she needed a prescription adjusted quickly without an urgent appointment. This clinical nurse specialist coordinated across the team, ensured continuity between neurology reviews, and connected Patricia with the Parkinson's UK local support group where she found a community of people navigating the same journey. 'She knows my story better than anyone,' Patricia says of her nurse. 'I trust her completely. She has never let me fall through the gaps.' The multidisciplinary approach — neurologist, nurse specialist, physiotherapist, occupational therapist — provided a coherence of care that had been absent before.

Two years into her specialist care, Patricia's motor control is significantly better than when she was first referred. The wearing-off periods are shorter, the dyskinesias are less intrusive, and she has not had a significant fall in eighteen months. She exercises five days a week, participates in her boxing class twice weekly, and manages her own medications with full understanding of the rationale behind each one. She uses a medication diary to track her symptoms, which she brings to every neurologist appointment. 'I am not cured,' she says frankly. 'Parkinson's is progressive. But I am living well with it, and I know what to do as things change. The team at Silvaris gave me knowledge and a partnership. That has made all the difference.'