People With Parkinson’s Disease Are Turning to the Web to Manage Their Condition
–Health Union’s “Parkinson’s Disease In America 2018” survey reveals people turn to internet resources nearly as much as they turn to doctor–
“By owning our disease we can then become an asset to others who come after us, as I have attempted to do over the past few years. Not only can we educate each other but our physicians as well by sharing our experiences.”
– Maria De León, ParkinsonsDisease.net
Parkinson’s disease (PD) can have an enormous impact on the lives of patients and their loved ones. As a chronic condition that slowly worsens over time and affects the nervous system, a person’s ability to do everyday tasks is compromised. This makes the condition increasingly difficult for patients and their care partners to manage. PD is unique to each individual and the exact cause is not known, adding to the frustration.
Online communities, like ParkinsonsDisease.net, are designed to illuminate the voices and experiences of people living with PD. They welcome people to connect with each other based on shared experiences, interests or frustrations. These connections and the access they provide to condition-specific content make online resources, as a recent Health Union survey discovered, the perfect complement to receiving vital information from a healthcare provider.
“Parkinson’s Disease In America 2018,” an annual survey conducted by Health Union, recently revealed the experiences and perspectives of more than 1,600 patients and care partners who are impacted by PD. The survey shows patients turned to PD-specific websites nearly as much as their doctor (62% vs. 65%, respectively) to learn about or manage their condition. Care partners are leveraging the web as well, with 63% saying they use both internet search and PD-specific websites for information.
PD patients want to better understand their condition, as three in five patient respondents said they play an active role in their PD treatment decisions. Additionally, 42% said they actively seek out information about the latest PD medications. Although there is much about PD that is uncontrollable, taking an active role in treatment can provide a sense of control and help people with PD live their lives to the fullest.
By providing opportunities for support and connection, PD-specific websites can help to make a PD diagnosis seem less frightening and overwhelming. Dedicated websites, like ParkinsonsDisease.net, offer an avenue for patients and care partners to connect with each other and share personal experiences, perspectives, expertise, frustrations and day-to-day challenges.
Online communities and support groups via PD-specific websites or social media are a wonderful way to find others who can relate to what a patient or care partner is going through. One “Parkinson’s Disease In America 2018” respondent even commented, “I feel a support group is essential for information and socialization.”
ParkinsonsDisease.net offers a safe place for learning, connection and validation. And, as patients and care partners are nearly as likely to seek out information from PD-specific websites as from their doctor, the power and benefit of online resources for both education and support are clear.