Hearing from Our Community: What Does Awareness Mean to You?
Last month, we recognized Parkinson’s Awareness Month, a time to spread information, hear from our community, and recognize the experiences of living with PD. To kick-off Parkinson’s Awareness Month, we asked our PD community, “What does awareness mean to you?”.
Awareness means educating yourself
“Learn all I can for myself.”
“Educate yourself on this horrible disease. It helps to know how to manage your symptoms.”
“Sharing of info among those who are affected.”
“Learning more every day!”
“Knowing I’m not in this fight alone!”
According to many of our PD community members, awareness begins with yourself. To better manage and cope with the challenges of PD, our community members have found that researching, reading, and asking questions has helped them along their Parkinson’s journey. In addition to their own investigation, many community members also reach out to one another, sharing the latest research, as well as their own experiences. According to many of you, your fellow PDers are often the best source of information and knowledge, making them the best source of support too!
Awareness means educating others
“Put more commercials on TV…maybe our families would see this and learn a little more.”
“I wish more people would understand there are also cognitive and mental effects of this disease, not just physical.”
“Every day is a new challenge… Good to make people aware of what we deal with on daily basis.”
In addition to educating yourself, for many of our community members, awareness means educating others about the complexities of PD. For many of you, awareness began with encouraging your family and close friends to learn about PD, allowing them to better support you as you face new challenges. During Parkinson’s Awareness month (and every month!), many of you hope that others will become better educated in all aspects of PD, from correcting myths and misconceptions, to recognizing that every person with PD has unique experiences and abilities.
Awareness means feeling supported
“To me, awareness means education and empathy.”
“Creating awareness begins at home and with family!”
“Do not hide… My friends know I have PD and understand.”
“Hoping that more people understand that those with PD should not be defined by it.”
For many of our PD community members, you hope that PD awareness will lead to more empathy and support from the people around you. Although many of you shared that your friends and family have learned how to encourage and support you, greater awareness may also enable the general public to be more understanding, sympathetic, and informed. Because PD affects as many as one million Americans1, it’s important for the whole country to recognize and support people living with PD.
Awareness means getting the care you deserve
“Talk with your doctor about every part of Parkinson’s…Do not be afraid to ask questions… It is your right to have the best care available to you.”
“Finding a good neurologist is also very important.”
“My wish for Parkinson’s awareness month is that everyone affected by PD has the opportunity to learn about getting access to good care…and how to be their own advocate…We all need to speak up and tell our doctors about our symptoms (physical and mental) and push them to help you live a better life with PD.”
“For me, awareness means having doctors know what Parkinson’s is, who it can affect, and recognizing the condition.”
For people affected by Parkinson’s Disease, choosing the right healthcare providers can go a long way in maintaining your quality of life. Although many providers are experienced in treating PD, some community members have shared the need to switch providers, or advocate for themselves with their current provider, to make sure they were being understood. As one of our PD Community Advocates shared, it’s important to advocate for yourself (or your loved ones who are affected by PD), even when you’re hesitant to question your provider or suggest an alternative. For these community members, awareness includes making your healthcare provider more aware of your needs and experiences, allowing you to get the best care possible.
Awareness means finding a cure!
“That everyone continues to strive for a cure”
“A cure, please!!”
“I wish for stem cell research and a cure!”
“A cure for this disease!!”
For many of our PD community members, awareness means hope for a cure. All over the world, scientists are researching the cause of PD, as well as new ways to manage and treat the disease. By studying biomarkers, proteins related to PD, gene therapy, and stem cells, researchers are working towards a way to prevent PD, and eventually, developing a cure.2 According to many of our community members, greater awareness means greater interest in and funding for research, moving us closer and closer to a cure for PD.
Last month, we asked our community to share their own definition of PD awareness. For some of you, awareness means educating yourself and others, while for others, awareness is about getting the care and support you deserve, and staying hopeful for a cure. While awareness means different things to different people, according to many of you, awareness also means finding support in the PD community and knowing that you aren’t alone. If you’re looking for more ways to promote PD awareness, we encourage you to share your story, and join the conversation today.
- Downward, Emily. "How Common is Parkinson’s Disease?" ParkinsonsDisease.net, Health Union, parkinsonsdisease.net/basics/statistics/. Accessed 23 Apr. 2018..
- Downward, Emily. "Emerging Research and Future Treatment Directions." ParkinsonsDisease.net, Health Union, parkinsonsdisease.net/research/. Accessed 23 Apr. 2018.