Survey highlights eagerness for Parkinson’s disease breakthrough discoveries

We at PhotoPharmics are passionate about representing the Parkinson’s community in an effort to raise awareness. In a recent survey, PhotoPharmics discovered a large percentage of people are waiting with great eagerness for breakthroughs that will improve the standard of care for people with Parkinson’s.

“We have made a strong effort to become a trusted contributing voice in the Parkinson’s community, and what we’ve found through our informal research is that this is a group that is ready and waiting with great anticipation to see a significant step forward in terms of Parkinson’s disease care,” said Brett Walker, spokesperson for PhotoPharmics.

The survey was shared through the biggest online Parkinson’s disease groups, and collected 108 responses. 66 (or 61%) said they did not expect to see a breakthrough in Parkinson’s disease treatment in their lifetimes, and 42 (39%) said they did.

Walker believes the results of the survey tell two, yet equally positive, stories.

“On the one hand, we believe it’s significant that nearly 40% of respondents are optimistic about breakthroughs coming in their lifetimes,” he said. “And in the other 60% we see a group with some significant unmet needs who is actively engaged, and waiting with eagerness for a major advancement.”

Leading Parkinson’s disease advocacy and research groups like the Michael J. Fox Foundation are followed closely by the Parkinson’s disease community. They regularly publish new Parkinson’s disease findings on their Websites and social media channels. Likewise, groups like the Parkinson’s Foundation, and the International Movement Disorders Society fund and publish important research relating to Parkinson’s disease.

“There are incredible organizations who have made Parkinson’s research their missions. They publish new information almost daily, and that information drives innovation from companies like ours,” Walker said.

The ongoing research surrounding phototherapy, or light therapy, as a treatment for Parkinson’s disease is of particular interest to PhotoPharmics. With a staff that boasts over 30 years’ experience in the field of light therapy, PhotoPharmics is on the vanguard of Parkinson’s disease treatment breakthroughs. Their proprietary technologies and research have been widely used and acquired by major players in the medical field to regulate circadian rhythms for seasonal affective disorder, sleep disorders, anxiety, and depression.

“We aim to make a clinically meaningful difference in patients’ lives by delivering safe and effective treatments,” said Kent Savage, PhotoPharmics CEO. “We are currently extending our research into other neurodegenerative diseases, and Parkinson’s disease specifically.”

PhotoPharmics is currently preparing for a phase-three clinical trial for a medical device they’ve developed specifically to address the non-motor and motor symptoms of Parkinson’s disease. This device recently received Breakthrough Device Designation by the United States Food and Drug Administration (FDA).

According to the FDA’s Website, “the Breakthrough Devices Program is a voluntary program for certain medial devices that provide for more effective treatment or diagnosis of life-threatening or irreversibly debilitating diseases or conditions. The goal of the Breakthrough Devices Program is to provide patients and healthcare providers with timely access to these medical devices by speeding up their development, assessment, and review.”

“Very few device companies receive Breakthrough designation,” Savage said. “Our device is the first specialized phototherapy device to achieve this status.”

“We hope to someday soon offer the major breakthrough so many are looking for,” Walker added. “We’re working on it every day.”

Those interested in learning more about PhotoPharmics, its upcoming clinical trial or its connection to the Parkinson’s community are invited to connect with us at PhotoPharmics.com/connect.

Living with a Parkinson’s diagnosis? People with PD offer advice, words of encouragement

One question sparks hundreds of thoughtful, compassionate responses

AMERICAN FORK, Utah—More than a million people every year are living with Parkinson’s disease in the United States. Over 60,000 are diagnosed every year, and many more are suffering without a formal diagnosis. It’s likely your life or the life of someone you love has been affected by Parkinson’s disease in one way or another.

But life is bigger than one disease, and nobody knows that better than the Parkinson’s community—a network that includes people with Parkinson’s, caregivers, family, friends and other supporters.

Recently this group banded together in big numbers to offer support and encouragement to newly diagnosed people with Parkinson’s. Over 530 people shared their answer to a simple question posed on some of the largest PD communities on Facebook: “What advice or encouragement would you give someone who has just been diagnosed with Parkinson’s disease?” The overwhelming feedback demonstrates the compassion and care of a community bound together by a devastating neurological disease.

“Learn exactly how patient you can be, and then learn to double it. At least,” said one Facebook user.
“Seek out positive role models, like [Michael J.] Fox,” said another. “Listen to his books, participate in research so you can feel empowered.”

Opinions and experiences were varied, since the question was posed to the entirety of the Parkinson’s community. Some of it was practical, such as the advice to get an attorney, or seek out the best care possible. Some of the advice was more philosophical, like the advice to “live life to its fullest,” or “enjoy every moment of every day.”

The common thread, however, was the desire to help. The answers came back quickly, and everyone who responded was eager to offer assistance, demonstrating the caring, nurturing, and optimistic nature of this unique community.

“We have learned so much about the Parkinson’s community over the years,” said Brett Walker, PhotoPharmics spokesperson. “One of the best things we’ve learned is the extent to which they support each other and rally around each other. When someone joins this community, they are immediately received into a network of love and support. When someone asks a question or seeks advice, the people respond in a big way.”

The responses were deeply heartfelt and often moving, and show the raw perspective of what it’s like to be ingrained in Parkinson’s disease.

Here are a few more bits of advice from the Parkinson’s community:

“Don’t let PD dictate your life. There will be plenty of time for that later.”

“I say to you, know you have more to offer than PD. Know deep inside there is an energy that ignites your deepest motivations. And stand willingly, no matter how shaky, and be determined to show others that we can’t be placed in a box.”

“Don’t listen to scary stories of what could happen. Everyone has different symptoms and reacts differently to various medications. The updated treatments available now are very good.”

“I would suggest that you find a neurologist that specializes in movement disorders & start physical therapy to remain active. I was lucky to find a PT who specializes in movement disorders & brain injuries. A good PT will give you exercises that you can do at home.”

“Here is what works for me. Exercise, eat healthy, practice yoga, eliminate negative situations and strive for a low stress lifestyle. Get busy living and moving while you can because nobody knows what’s around the next bend. Be kind to yourself and ask for help when you need it.”

“Go on a nice trip.”

“You are not your diagnosis. Stay true to you and stay active. Find a support group for difficult days and know that you are loved and supported by friends and family no matter how bad the day feels.”

“Tell family and friends so they understand.”

“It’s not a death sentence. You’ll just need to make a few adjustments to your daily routine.”

For more research and news from people with Parkinson’s, as well as updates on what PhotoPharmics is doing to introduce breakthrough Parkinson’s treatment technology to the world, follow PhotoPharmics on Facebook, Twitter and Instagram, and sign up for PhotoPharmics updates at PhotoPharmics.com/connect.

About PhotoPharmics

PhotoPharmics is a privately held, clinical-stage medical device company developing next-generation treatments for treating neurodegenerative diseases. Company founders have 30+ years of research and experience in this field. They previously developed specialized light solutions now widely used to regulate circadian rhythms in seasonal affective disorder, sleep disorders, anxiety, and depression (acquired by Philips-Respironics in 2007).

Drawing from research and recent trials, PhotoPharmics is developing applications of specialized light across several neurodegenerative diseases. The company aims to make a clinically meaningful difference in patients’ lives by delivering safe and effective non-invasive treatments. Investor inquiries are welcomed. Learn more at www.photopharmics.com.

People with Parkinson’s share four tips for coping with holiday stress

The Holiday season can be the most joyful, wonderful time of the year. It can also be complicated, stressful and depressing. This is true for everyone, but people with Parkinson’s disease have an especially unique perspective on this festive time of year.

Recently we asked a large online Parkinson’s disease community—which includes people with Parkinson’s, caregivers, friends, family and other interested parties—what impact the Holidays had on their disease. The responses provide insightful perspective, and invaluable advice from an amazing, courageous and hopeful group of people.

Tip #1: Express gratitude

Diana A. said she relies on gratitude to navigate the Holiday season. “Honestly for me the holidays are hard,” she said. “Ups and downs, but I am thankful for what I have.”

Kathleen K. agrees. “I choose to downplay holidays anyway,” she said. “The less pomp and pageantry the better, for me. I’d rather live each day being thankful.”

According to Psychology Today, expressing gratitude can improve physical health, open the door to relationships with other people, enhance ability to feel empathy and more. “Whether you choose to write a few sentences in a gratitude journal or simply take a moment to silently acknowledge all that you have, giving thanks can transform your life,” their site says.

Tip #2: Simplify your life

One respondent relies on simplification to ease the stress of the season. “Stress is not good for Parkinson’s and Christmas is usually stressful,” said Susan F. “We changed our Christmas to a quiet day with one or maybe two guests, or if we wanted to do family Christmas we left before it got too bad.”

Studies show that living a simplified life can reduce stress, save money, improve physical health and even help the environment. Check out this article on Happiness.com to learn more.

Susan continued, “2020 is so full of stress that this year I am staying home and watching Christmas movies with eggnog and fruitcake.”

Tip #3: Share time with loved ones

Above all, the most valuable advice given by people with Parkinson’s was to try and surround yourself (even if it’s just virtually) with people you love.

“My husband with Parkinson’s and I will be spending the Holidays alone in our home this year due to Covid,” said Joy K. “We are TOGETHER and that’s what counts.”

“For me the Holidays are both good and not so good,” said Evelyn V. “I love the holidays and still have the desire to do everything I’ve always done but find that I lack the energy to do it all like in the past. But I’ll get done what I can and be content with that. I just remind myself that the season is about love, kindness and sharing and not how much I decorate or bake or entertain.”

Tip #4: Stay busy

Lynn E. chose to see the busyness of the season in a decidedly optimistic light. “I’d say it’s a good thing for me because it forces me to stay busy with various tasks,” he said. “My greatest enemy with PD is the urge to do nothing. So, having motivation to keep moving is a good thing about this time of year. If someone is a family member or caregiver, I would strongly recommend assigning tasks and keeping the person with Parkinson’s engaged.”

The personal development site Lifesorted.com credits keeping busy as an important way to stay focused and calm.

According to the site, “staying busy is a great way to combat negative emotions and stay positive. When our plans are in progress, we feel hopeful and motivated. Often when we’re busy, we don’t have time to dwell on feelings of worry, sadness, loneliness, anger or jealousy, which can be a good thing.”

If you have specific strategies to avoid Holiday-related stress and anxiety, and benefit the Parkinson’s disease community, please share them on the PhotoPharmics Facebook page.