You are never alone! Even when you feel like you are the only one who can ever possibly understand your paralysis, there is likely someone, somewhere who presently is going through or has been through the same thing, or at least something similar. Millions of people around the world are living with paralysis. You just need the right resources to help you connect to a community that can offer you the support you need and to help you continue thriving with paralysis.
Here are a few online support groups and online communities where you can discuss shared experiences, find guidance, and connect with resources that can help you through any stage of living with paralysis. You can also use some of these online communities to locate local support groups for personal interactions with other paralysis survivors.
All you need to do is register with a username and password, and you can immediately connect on Inspired’s spinal cord injury and disability boards. There are already tens of thousands of posts on thousands of topics, so register today and get Inspired!
The United Spinal Association is made up of chapters in 31 different states plus the District of Columbia. Since they all operate independently, there are various resources from chapter to chapter. To see if there is an association in your state and what resources they offer click here.
The CareCure Community is based at Rutgers University and comprises of two sections. The care community has a forum where you can discuss varying topics from relationships and sexuality to equipment and exercise. You can also ask questions to spinal cord injury nurses in the care forum.
The Cure side of the community is devoted to the latest advancements in therapies designed to restore function for those who are living with a spinal cord injury. There is up to date news as well as research articles regarding everything from TBIs and stroke to SCIs and multiple sclerosis. You can find anything you want to know about the research in regard to paralysis here.
The Northwest Regional Spinal Cord Injury System, based at the University of Washington, is a monthly forum that scheduled in the evening. You can watch videos of past forums and look through the archive of previous topics. You can also subscribe to get email notifications regarding the forums. Discussions are of interest to those living with paralysis as well as caregivers and family members.
Pushrim is a unique social media platform designated for the spinal cord injury community. There are currently more than 2,300 members connected through this community. You can add your own blog posts to the community site and read those posted by others. There are also podcasts available that provide topics of interest for patients, caregivers, and family members. You need to create an account to access the majority of the site.
SPINALpedia is another unique online community that allows you to share inspiring videos and images and to view those of other members. There are also learning portals and a blog to provide additional information relating to spinal cord injuries. There are more than 25 categories of information and over 125 subcategories to help you find the information you want. The community feature also allows you to follow accounts that you find to be the most inspiring so you can quickly access the images and videos that are going to brighten your day. You can make friends and speak to other members one on one or in a group chat setting.
No discussion about the paralysis community is complete without mentioning the Christopher & Dana Reeve Foundation. Reeve Connect is the community portion of the website. There are forums involving relationships, wellness, and even one to share what has worked for you with other community members. You can discuss everything from how accessible your last accessible hotel room actual was to what you should do if your medical care provider isn’t taking your condition seriously enough.
Thriving with Paralysis is all about finding hope and learning that you still have a purpose and can reach goals that allow you to thrive rather than just to survive. We have divided our posts into three categories: survivors, spouses, and caregivers. You can receive monthly emails by signing up on our homepage. There is no spam, and you are under no obligation to continue receiving blogs – you can unsubscribe at any time.
We also have an inspiration page, where you can read the experiences of authors, motivational speakers, performing artists, and other successful individuals who are proving that the paralysis community can have an impact, not only on one another but on the world. You may just find the inspiration that you need to start up your own business or project. Be sure to check back regularly to see our latest blog posts, resources, and inspirational stories. You can also contact us here to ask questions, let us know what you love about the site, or to make any suggestions on how we can improve this site to be a better resource for you and your family. We look forward to being a part of your journey from surviving with paralysis to thriving with paralysis!
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