The Problem:

The Definition of Parkinson’s is Too Narrow

About Us

We are people with Parkinson’s dedicated to elevating the voices of those with lived experience of Parkinson’s to inform the way Parkinson’s is understood, treated, and ultimately cured.

What We Offer

Resolve Parkinson’s offers opportunities for you to contribute to a changed future. You can help us transform the future of Parkinson’s.

A narrow focus on Parkinson’s motor symptoms has stifled progress in finding a cure and left many patients without comprehensive care for their full range of symptoms. 

For decades, Parkinson’s disease has been primarily defined by its motor symptoms: tremors, rigidity, and bradykinesia. While these symptoms are central to the disease, they represent just one facet of a broader syndrome. Parkinson’s is not a single disease but a complex spectrum of symptoms — many of which are non-motor and often appear years before motor symptoms manifest.

The overemphasis on motor symptoms in research and clinical care has left critical non-motor aspects of Parkinson’s underexplored. Symptoms like cognitive decline, sleep disturbances, depression, anxiety, and gastrointestinal issues are poorly understood, even though they profoundly affect patients’ quality of life. Despite their prevalence and severity, non-motor symptoms are poorly recognized, inadequately treated, and underrepresented in research. This limited focus hinders early diagnosis, comprehensive treatment, and the development of therapies that address the full spectrum of Parkinson’s.

Parkinson's as a Syndrome: A Broader Understanding

Emerging research suggests that Parkinson’s is better understood as a syndrome — a collection of related disorders with shared underlying mechanisms. Motor symptoms, though visible and diagnosable, often appear in the later stages of the disease. By the time these symptoms are identified, critical windows for earlier intervention may have passed.

Non-motor symptoms, such as:

  • Cognitive decline and memory issues
  • Sleep disorders, including REM behavior disorder, excessive daytime sleepiness, and insomnia
  • Mood disturbances like depression and anxiety
  • Autonomic dysfunction, including blood pressure irregularities, bladder problems, and sexual dysfunction
  • Gastrointestinal symptoms such as constipation
  • Sensory symptoms including pain, loss of smell, and vision changes.

 

These non-motor symptoms are not just side effects — they are integral to the disease’s progression and may hold key insights into earlier detection, more effective treatments, and ultimately, a cure. And while some of these symptoms can be alleviated with existing treatments, others are more resistant and require innovative research into non-dopaminergic therapies. 

These non-motor symptoms are not just side effects - they are integral to the disease's progression and may hold key insights into earlier detection...

The Consequenses of a Narrow Focus

The limited definition of Parkinson’s has led to several significant problems:

  1. Underrepresentation in Research: Non-motor symptoms remain poorly studied, leaving critical knowledge gaps about the disease’s early stages and full impact
  2. Delayed Diagnosis: Patients often struggle for years with unexplained non-motor symptoms before receiving a Parkinson’s diagnosis
  3. Incomplete Treatment: Care models primarily address motor symptoms, leaving patients without sufficient support for equally debilitating non-motor challenges.

Steps Towards a Solution

Resolve Parkinson’s is committed to shifting the paradigm by advocating for a broader, more inclusive understanding of Parkinson’s as a syndrome. By shifting perception and practice within the medical and research communities, we aim to redefine Parkinson’s and transform care.

We are working towards a future where:

A Call to Action

Parkinson’s is more than tremors — it’s a complex syndrome that deserves a broader understanding. Join Resolve Parkinson’s in advocating for research and care that reflects the full spectrum of patient experiences. Together, we can push for earlier interventions, more inclusive research, and better care for all those impacted by Parkinson’s. Learn more about our vision for the future and how we’ll get there.

The Problems We See

The System of Care is Poorly Designed

The current system to assist people with Parkinson’s appears to have evolved without rational planning. Systemic issues include lack of patient access to Parkinson’s specific care, ineffective drug therapies, and a poorly socialized standard of care in health settings. This has led many patients to try to manage their care on their own.

Alternative Therapies are Excluded from Research

Led by desperation and ineffective drug therapies, patients with Parkinson’s have found relief through lifestyle changes and treatments that aren’t patentable or otherwise able to be monetized. These approaches have been eschewed by the mainstream medical community.

There is a Lack of Access to Quality Care

Most patients with Parkinson’s lack access to multidisciplinary teams of specialists including neurologists trained in Parkinson’s, movement disorder specialists, physical and occupational therapists, and mental health professionals. This team approach has proven to be the most effective model of care for Parkinson’s patients.

The Patient Voice is Being Ignored

Parkinson’s patients need to have a seat at the table throughout the clinical research process. Patient input into how resources are used is a critical missing element that will bring about change if broadly applied. Positioning the patient voice more powerfully will disrupt stagnation and drive change.

Research Targets Are Profit-Driven

The pharmaceutical industry ecosystem dictates where research funding is allocated. Patients with Parkinson’s need to be positioned as leaders in the fight to improve care and find a cure. Their voice needs to be a critical component of legislation and research targets.

Researchers Ask the Wrong Questions

There is a dearth of creative thinking in the Parkinson’s field. Research priorities need to shift to include the investigation of a broader range of hypotheses concerning Parkinson’s origin and progression. Out-of-the-box thinking can spur innovation that may lead to a breakthrough towards better treatment and a cure.
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