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What Are the Benefits of an Online Community for Parkinson’s?

There’s something about an online community that allows us to bring our burning questions and our deep, middle-of-the-night worries without worrying about judgment. Online communities, especially moderated ones such as the ParkinsonsDisease.net Facebook page, are safe spaces for getting information, venting and receiving support from like-minded individuals – and in this case, people living with Parkinson’s.

Views from the community

To hear more about how you get the most out of online communities, we asked you to fill in the blank: “I come to this community page because ___________.”

More than 70 of you commented, and here’s what you had to say.

“I’m trying to learn everything about my PD diagnosis.”

One of the biggest reasons that members stay so active on the site is information. So many of you are eager for information on others’ experiences, successes with medication, complications to be mindful of, what others’ doctors are saying, and more. We can learn on our own, yes, but learning can be so much easier when we are learning from and with our peers.

“I have PD and find valuable information on this site.”

“I was diagnosed last year and have so many questions… .”

“I’m trying to learn everything about my PD diagnosis.”

“I’m always looking for suggestions on how to manage different symptoms.”

Likewise, a piece of the puzzle is that this community connects big numbers of folks across the country who live with this disease. When you have questions about a unique symptom, you’re much more likely to connect with someone who has had experience with that same thing thanks to the fact that an online reach will always exceed that of our own circle of friends and acquaintances.

“I’m always looking for suggestions on how to manage different symptoms. Right now I’m struggling with dreams that I wake everyone in house with.”

“My dad has PD, and I want to see if there are ways I can help him.”

So, so many of you shared that you are a part of this community to find ways to help and support a loved one with Parkinson’s. We are so grateful for your example of being a loving, supportive caregiver. We appreciate you being such an active part of the ongoing conversation.

“My dad has PD, and I want to see if there are ways I can help him.”

“A guy I care about a lot has Parkinson’s, so I want to know the latest hopeful ways he and his family can be helped. We like optimism!”

“My father has Parkinson’s and I want to try and help him the best way I can! We live in a small city so there isn’t a lot of information out there!”

“I like to hear how others are navigating the day-to-day and night-to-night physical and emotional realities.”

Living with a diagnosis can bring new complications each day and each night. So many of you come to online communities, such as ParkinsonsDisease.net, to hear more about the ways that the disease affects everyday living that people aren’t always speaking about. Well, they are talking about those things here. Online communities provide a safe space to open up and talk about anything – allowing people to get more vulnerable than they might otherwise.

“I like to hear how others are navigating the day-to-day, night-to-night physical and emotional realities. Thanks!”

“I want to give support.”

We especially love seeing how many of you stick around the community simply to give back—whether because you’ve gotten something from the community, or because a loved one with PD has passed, and you still feel connected to the community in a way that inspires you to give back. For all of the support, we are grateful.

“I want to give and receive support to the patient and the caregiver.”

Every diagnosis affects a sphere of people, not just the one with the diagnosis. All who love the person with Parkinson’s will have feelings about watching someone suffer or have difficulty. How wonderful that so many of you are looking to be supportive to both the person with the diagnosis and to those who provide care. It takes a village!

“I try to offer encouragement to the patient and the caregiver.”

“I am interested in reading how others are dealing with PD. I compare them to what our situation was and try to offer encouragement to the patient and the caregiver.”

“I want to feel that I’m not alone in this fight.”

For anyone, the difficulty and challenge of walking this path is made much easier—lighter—when we know we are not alone. Nobody wants to feel isolated. Feeling isolated can easily lead to depression, which leads to feeling hopeless, which can lead to not putting effort toward living your healthiest life possible. It is our hope that everyone with PD can turn to this community for support and connection, and to feel empowered to move forward in taking that next right step toward living a brighter tomorrow with this diagnosis.

“I want to feel that I’m not alone in this fight.”

“I need people in my life like myself.”

We wish to say thank you to everyone who participated in this question. We are so grateful for every member of ParksinonsDisease.net.

Comments

  • Dan Glass moderator
    3 weeks ago

    So many great people out there keeping all of us Parkies, caregivers, and health care professionals feeling loved and assisted. Thanks! We’ll keep giving you more of the same!

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