When most people think of Parkinson’s Disease (PD), the first symptom to come to mind are physical tremors and other movement symptoms. However, most people with Parkinson’s experience a wide range of non-motor symptoms that can often be more disruptive to their daily lives. Several of the most common non-motor complaints are associated with sleep issues. We all need sleep for our bodies to revitalize and repair as well as for productive days. For people with PD, achieving regular, healthy sleep and staying alert the next day are among the many problems associated with the disease.

PhotoPharmics is finalizing plans for a clinical trial of our FDA Breakthrough therapeutic device, Celeste®, aiming to relieve non-motor symptoms for people with PD from specialized phototherapy.

Over 75 percent of people with PD report these issues. These can come from a variety of sources. Parkinson’s itself can cause sleep disruptions and contribute to daytime fatigue, while many PD medications can often aggravate these problems. This lack of restorative sleep can affect patients’ quality of life and also their bodies’ ability to manage PD. Daytime fatigue further impedes personal productivity and reduce social interactions.

The following is a list from Parkinsons.org of the most common sleep issues people with Parkinson’s face

• Difficulty falling and staying asleep
• Excessive daytime sleepiness
• Talking or yelling out while asleep
• Vivid dreaming
• Leg movements, jerking, cramping (restless leg syndrome)
• Difficulty turning over in bed
• Waking up to go to the bathroom

Experts advocate several things that to help people with PD get a better night’s sleep. First, make your sleeping schedule consistent. Plan to get around eight hours of sleep a night. Go to bed around the same time each night and wake up (or get out of bed) at similar times in the morning. It can also help to have a bedtime routine (drinking water, brushing teeth, etc.) to help prepare your body for sleep.  

Second, night-time sleep quality can be affected by what you do during the day. Experts recommend daily exercise and spending time outside if possible. While this may be difficult for some, exposure to sunlight is also recommended. PhotoPharmics is finalizing plans for a pivotal clinical trial of our FDA Breakthrough therapeutic device, Celeste®. The aim of this trial is to confirm the high levels of relief for non-motor symptoms for people with PD from specialized phototherapy.

To learn more and receive updates about this clinical trial or other details about PhotoPharmics, visit photopharmics.com.

“What would I do without my caregiver?”

Many people with Parkinson’s disease ask themselves some form of this question every single day. Caregivers come in all shapes and forms, but they all have one thing in common: The work they do is absolutely critical.

But it’s not an easy job. Far from it. Caring for someone else—especially those with severe or advanced cases of Parkinson’s disease—can be exhausting, draining and even overwhelming.

That’s why we want to take the time to celebrate National Caregivers Month and recognize and salute the outstanding caregivers all over the world.

“There are only four kinds of people in this world: those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers. Caregiving is universal.”

– Rosalynn Carter, former United States First Lady

Caregivers take many forms: They are spouses and children, friends and family, medical professionals and volunteers. “In simple terms, a caregiver is a person who tends to the needs or concerns of a person with short- or long-term limitations due to illness, injury or disability,” say the experts at Hopkinsmedicine.org. They work full- or part-time, and they do many myriad indispensable tasks. Caregivers truly exemplify selflessness, as they often work without recognition, thanks or compensation.

Caregivers engage in tasks like (but not limited to) transportation, shopping, organization, planning, health monitoring, communicating with professionals, acting as advocates, assisting in getting up or active, doing housework, preparing meals, managing finances and so much more.

The need for a care team is vital.

According to MichaelJFox.org, “Care partners play a major role in the well-being of a person with Parkinson’s disease. Care partners take on many responsibilities, from accompanying a loved one to doctor appointments to managing more household responsibilities. For the most part, care partners do not need special medical training. What’s important is establishing a partnership — a mutual understanding of what kind of help with daily tasks and emotional support the person with Parkinson’s wants and needs as the disease impacts your routines and lives.”

And because caregivers are so intensely and consistently engaged, it can be easy for them to “burn out,” or feel so overwhelmed that they can no longer function at a high capacity.

That’s why it’s important for caregivers to remember to care for themselves as well.

Parkinson.org says, “Self-care is the practice of taking an active role in protecting one’s own wellbeing. It is important to retain a meaningful relationship with yourself and manage your own self-care to effectively care for your loved one with Parkinson’s. Your needs are important, too!” After all, it would be impossible to offer care to someone else, when the caregiver is operating at a drastically limited capacity.

Here are some ways to practice self care:

• Talk to a support group or trusted friend
• Write about your feelings and struggles in a journal
• Practice breath work and meditation
• Get active—find a daily exercise routine

Being a caregiver is heroes’ work. But remember: Even heroes need a break every now and then.

For more information about being a caregiver, practicing selfcare or building a care network, visit Parkinson.org and MichaelJFox.org.

Innovative medical devices and diagnostics can get to patients and providers sooner under the U.S. Food and Drug Administration’s (FDA) Breakthrough Device Program. The program provides a special regulatory Breakthrough Device Designation for medical products that have the potential to more effectively treat or diagnose serious or life-threatening conditions. See the full article on page 19 >

As a medical device company on the edge of a major breakthrough, we get a lot of questions from people who are curious about our work and mission. We love that so many are interested in our work! We truly believe we have the technology and experience to change the world.

To make things easy for those who would like to know more about PhotoPharmics, we decided to publish a list of some of the most common questions we get, along with our answers. Enjoy!

Q: What is PhotoPharmics?

A: PhotoPharmics is a clinical-stage medical device company which has developed a specialized phototherapy device to treat neurodegenerative diseases. We are the first company with a specialized, home-use phototherapy device for people with Parkinson’s disease to receive significant recognition by the FDA as a Breakthrough Device. Our device is slated to enter a phase 3 clinical trial. We are leading the way on what could be the biggest breakthrough in Parkinson’s disease treatment in decades!

Q: What experience does the PhotoPharmics team have?

A: Our founders have more than 30 years of experience in the field of phototherapy, having previously developed specialized light solutions that are now widely used to regulate circadian rhythms in treating seasonal affective disorder (“winter blues”), sleep disorders, anxiety and depression.

Q: What is PhotoPharmics’s connection to Parkinson’s disease?

A: When it comes to Parkinson’s disease, we feel two major calls to action: First, we are using our vast experience to pioneer technology that could potentially be the biggest breakthrough in PD treatment in decades. Second, we feel a great need to raise awareness of the devastating non-motor symptoms of Parkinson’s disease which, unfortunately, rarely get discussed but can be even more life-altering than the motor symptoms.

Q: What does your device do?

A: Our specialized phototherapy device was designed to address and improve the motor and non-motor symptoms of Parkinson’s disease by stimulating regulation of the body’s natural circadian rhythm.

Q: Does it work?

A: Yes. Our phototherapy technology has been shown in clinical trials to improve the serious non-motor symptoms of PD as well as overall quality of life on top of best managed care.

Q: How does your device work?

A: Our home-use, non-invasive light therapy device uses a specialized, proprietary combination of light intensities and bandwidths to target the photoreceptors in the eye, creating a therapeutic effect to ease disease symptoms.

Q: Is your device part of any upcoming clinical trials?

A: Yes. PhotoPharmics has partnered with the Center for Health and Technology at the University of Rochester to begin a phase 3 clinical trial. It will be an at-home trial with 200 participants over six months. Participants will submit their information remotely utilizing technological innovations, opening the trial to some who would otherwise be inaccessible.

Q: Can you safely conduct a clinical trial under the conditions of a global pandemic?

A: Yes! Our trial will be conducted remotely. Each Participant will receive a device, and they will perform every function of the trial at home, including doctor visits and submitting personal results via the internet. It is a safe, non-invasive, stay-at-home trial, perfect for our time.

Q: Does the device interfere with daily life?

A: No. Research participants found the device (about the size of a laptop computer screen), to be safe and convenient to use while watching TV, reading, using a smartphone or taking part in other seated activities.

Q: Where can I learn more?

A: Sign up to be notified as more details emerge about PhotoPharmics, our specialized phototherapy device and upcoming trial information: PhotoPharmics.com/connect

We absolutely love Spring. There’s something so magical about the awakening power of Spring after a long and cold winter. One of the things we love most about this time of year is that it allows us to start getting outside again into the warm and sunny weather.

And since we’re always thinking about Parkinson’s disease, and the millions of courageous people around the world who battle its motor and non-motor symptoms every day, we got curious: Does being outside have a particular benefit for people with Parkinson’s?

We did some research, and what we found was fascinating! Here’s what some leading minds in Parkinson’s disease research had to say about the subject.

The Brian Grant Foundation, a Parkinson’s awareness organization created by the former NBA star after his diagnosis in 2008, says being outdoors has tremendous health benefits for people with Parkinson’s.

The site suggests people with Parkinson’s, well, take a hike.

“Depending on the length and intensity of the trail, and the steepness of your incline, you’re in for a powerful cardio workout that can lower your risk of heart disease and improve your blood pressure and blood sugar levels, while filling your lungs with fresh, clean air.”

In addition to being a great workout, the article notes, hiking outdoors can be a soothing way to clear your mind while enjoying nature.

“Adding to the fact that you’re taking in the mesmerizing sounds of wildlife and some of the most scenic views Mother Earth has to offer—be it forests, mountains, deserts, waterfalls, rivers or creeks—hiking nourishes the mind, body and soul in ways no other workout can.”

Spending time outdoors is more than just good advice, however. Scientific studies have shown experiences in nature can help relieve certain symptoms—non-motor and motor alike—among people with Parkinson’s.

The National Institutes of Health (NIH) recently published some research indicating walking on the uneven surfaces of the great outdoors could help people with Parkinson’s relieve the freezing-of-gait symptom, in which they feel like their feet are stuck or glued to the ground.

The study’s abstract concludes, “our results, if repeated in future studies, may have significance to everyday lives of PD patients, who could get a simpler life by consciously prioritizing stays in natural surroundings.”

Read the entire study here.

The Michael J. Fox foundation, an always reliable source for the latest Parkinson’s disease research and discussion, also had great things to say about being in the outdoors.

In this article, the MJFF explores a study reporting that nature walks are good for our brains.

And here they suggest seven Spring workouts for people with Parkinson’s symptoms.

Finally, we took it straight to the people themselves. We asked some of the biggest Parkinson’s communities on social media to weigh in on the subject, and the answer was clear: Being outdoors makes a big difference.

“For some reason I can walk through the park on trails better than in my house,” Mike F. said. “I do still ‘freeze,’ but not as often or severe! Exercise definitely helps!”

“Gardening really helps me,” Shaun M. said.

Shawn H. added, “the Vitamin D from sunshine and fresh air help alot [sic].”

“My [husband with Parkinson’s] just appreciated getting out and seeing the world because in the last year and a half of his life it happened so little,” said Hillary M., a Parkinson’s caregiver. “Cheered him right up to see trees and flowers, or even the neighbors’ front lawns – I’d take him down the stair lift, out the door, and set him up on a chair on our front steps.”

“Just being outside is a gift,” Mark B. said.

Don’t let this good weather go to waste! Do something good for your body, mind and soul, and spend some quality time outside.