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.
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.