Better together: harnessing the power of common concerns

Posted by Michael Collins in Life After Paralysis on March 02, 2017 # Health, PFSP

When it comes to seeking out resources for living better while paralyzed, we often think first of the usual sources. A few of those focus specifically on paralysis, including the Reeve Foundation, United Spinal, SPINALpedia,Conquer Paralysis Now and similar "fonts of knowledge" that are widely known.

Those, and hundreds of organizations or agencies of a similar nature, dole out great advice on a broad range of issues that concern millions of people around the world who live with paralysis. They provide an invaluable service to our community, but there is one feature that distinguishes the best from the rest: the ability of "consumers," including family members and knowledgeable professionals, to interact with and learn from each other.

My introduction to such valuable resources came while I was still undergoing my initial rehabilitation not long after sustaining a spinal cord injury in 1988. Much information was made available in scores of complex printed documents (remember, this all happened before Al Gore invented the Internet) provided by the professionals who were working on rehabilitating us. Those pages warned of the hazards of pressure sores, urinary tract infections, autonomic dysreflexia and other complications that still create some anxiety whenever I hear them mentioned. Even though there was a lot of valuable information in those handouts, almost to the point of overload, there was still a nagging feeling that something was missing.

My fellow rehab ward residents and I wanted to hear from actual individuals who had been paralyzed but were now living in the community, so that we could question them about what issues they faced and how they dealt with them. Once armed with that information it seemed likely that we would have greater odds of success in dealing with whatever awaited us once discharged.

Our request for an opportunity to meet with these former patients resulted in a series of evening forums that included refreshments provided by the hospital. We freely shared information about bowel and bladder management, sexuality, public benefit programs, housing needs, employment opportunities and how to handle lack of accessibility in that pre-ADA world that awaited us once outside the comfortable confines of the hospital's rehabilitation wing.

Since those early days I have learned that similar gatherings or events occur wherever a group of individuals meet or talk to share common concerns related to the aftereffects of a particular type of injury, disease or disability. SCI Forums sponsored by Regional Spinal Cord Injury Centers and large rehabilitation hospitals provide an opportunity to hear from experts about the latest technology and advances in research and treatment. Each of those sessions offers the ability to ask plenty of questions and share common experiences for the benefit of all who attend. Most of these organizations also maintain informative websites and publish periodic newsletters to keep interested parties abreast of the latest developments in the broad fields of treatment and research.

The most effective resources of this type are those that are driven by and that have the full involvement of those who have a real need for the information that is shared. Some, like the Here and Now Project, focused initially on durable medical equipment such as wheelchairs. Other resources are taking advantage of social media, such as You are not Alone--Dealing with Spinal Cord Injury and Rise up to Cure Paralysis which are active groups on Facebook.

There are groups for people with specialized needs or unique benefit programs and who may also have access to specialized resources. Women can have their questions answered, or share their knowledge, at mobileWOMEN. Families are the focus of FacingDisability.com, which is also internet-based.

Military veterans might need to have access to information that goes beyond spinal cord injury, due to the higher rate of amputations and traumatic brain injuries sustained in conflicts around the world. Their access to benefits, like medical insurance and provision of equipment, may be different but they need to know about what is available and can learn that on such sites as Vets First.

The best resources continue to be those that are interactive and create connections like the Reeve Foundation’s online community and Peer & Family Support Program.

(Note: the fact that an organization or resource is not mentioned in this blog has no bearing on its value in comparison to a similar source: it is due to space limitations.)

© 2017 Michael Collins