Non-Motor Symptoms Common and Often Felt First, Informal Survey Finds

Although Parkinson’s disease (PD) is largely known for tremor and other motor symptoms, the vast majority of patients in an informal survey said they noticed non-motor issues, such as cognitive changes, first.

The one-question Facebook survey, conducted by the medical device company PhotoPharmics, was reported to draw more than 100 responses. It found 87% of respondents were aware of the disease’s non-motor symptoms before problems with movement became apparent.

“With such a high percentage of people with Parkinson’s recognizing non-motor symptoms, it’s no wonder the International [Parkinson and] Movement Disorder Society has declared addressing non-motor symptoms a top priority,” Brett Walker, a PhotoPharmics spokesperson, said in a press release.

“Simple studies like ours provide interesting insight into what it might be like to live through the Parkinson’s disease experience,” Walker added. The Utah-based company expects to soon open a clinical study of a light-based device that might ease Parkinson’s symptoms.

Patients in the survey responded to the question: “When did you first experience non-motor symptoms of Parkinson’s disease (pain, depression, insomnia, anxiety, etc.)?”

A reported 78% said such non-motor symptoms were evident to them before their disease was diagnosed. Nine percent reported experiencing non-motor symptoms after a diagnosis, but before motor symptoms; 11%  also noticed non-motor symptoms after a PD diagnosis, but they experienced motor symptoms first. Non-motor symptoms were unknown to 2% of respondents.

In Parkinson’s, which affects more than 10 million people globally, the main motor symptoms include tremor, muscle stiffness, postural instability, gait difficulties, and slowed movement (bradykinesia). Non-motor symptoms can range from a loss or diminished sense of smell and sleep problems, to depression and anxiety, psychosis, and cognitive changes.

PhotoPharmics is developing a specialized phototherapy device, called Celeste, that might help to ease such symptoms. A pivotal clinical trial, called LIGHT-PD (NCT04453033), is set to soon test its tablet-like device against a sham device in up to 200 people with Parkinson’s, ages 45 and older. Phototherapy will be given in addition to current medications used by study participants.

Celeste is intended for use in the home, and employs a combination of specific light intensities and bandwidths that are “responsible for circadian [daily sleeping and waking cycles] and alerting responses,” the trial’s document states.

A collaboration between PhotoPharmics and the Center for Health + Technology (CHeT) at the University of Rochester Medical Center — the six-month trial will randomly assign patients to Celeste or a sham device (producing the same bandwidths of light, but at different intensities) to be used one hour each evening. Other activities, like while watching TV, eating dinner, or reading, can be done at the same time.

Its primary aim is to assess changes with the device’s use in patients’ motor and non-motor symptoms, as measured through the Movement Disorders Society-Unified Parkinson’s Disease Rating Scale, parts one and two. Contact information for LIGHT-PD, set to open in November, is available here.

Recently, Celeste was designated a breakthrough device by the U.S. Food and Drug Administration, a designation given to medical devices with the potential to offer effective treatment for life-threatening or debilitating diseases.

“Very few device companies receive FDA Breakthrough Device Designation. Our device is the first specialized phototherapy device to achieve this status,” said Kent Savage, PhotoPharmics CEO. “Our focus is to help people with Parkinson’s improve function and return to what they enjoy doing most. We think this recognition by FDA validates our work.”