Why secondary conditions should be a primary concern

Posted by Michael Collins in Life After Paralysis on July 05, 2017 # Health

Lying in bed, immobile, during those first few days after my paralyzing spinal cord injury provided ample opportunity to ponder my new condition and the uncertain future that awaited me. Housed in a rehab unit with other patients of all ages and a variety of conditions, we faced a bewildering, often exhausting, array of daily therapy sessions; they were done in order to return us to whatever levels of function might be attainable after whatever brought us there in the first place.

During those first few weeks, (yes, weeks, since we got to stay in rehab much longer in those olden days) we were subjected to as much new information to read and comprehend as I had ever encountered in a college classroom. New terminology, often with warnings that the subject matter might kill us if we ignored it, arrived daily.

Some of that reading material was delivered immediately after my injury. Other documents arrived after whatever malady that was being described was wreaking havoc on my "newly fragile" body had already made its presence known.

As with much learning, personal experience usually proves to be much more effective than studying a text. Thus I learned firsthand about such threats to my existence as Autonomic Dysreflexia; Urinary Tract Infections; Sepsis, aka Septicemia that followed two of those UTI's; Clonis and other types of spasms that refused to yield to high doses of the most common anti-spasm medications, and a stubborn digestive tract that did not want to follow any type of reasonable, or regular, schedule. I was also warned about Decubitis Ulcers, or pressure sores, and I have witnessed the aftereffects on many of my friends and peers during the ensuing 29 years I have spent in this wheelchair.

Since I had never spent any adult time in a hospital, some of the personnel and specialties that I encountered were unknown to me. Many of the following were regular visitors to my hospital room, or provided unique services that combined to keep me alive and somewhat healthy at the time; the phlebotomists, nurses, nursing assistants, physiatrist and a variety of therapists (PT, OT and TR) were there daily, or at least it seemed that they were. Dieticians, my neurosurgeon, proctologist, urologist and radiologist appeared only when things were going wrong.

Florence Nightingale or Dr. Kildare couldn't have outperformed the quality of the care I received from many of these dedicated individuals. There are probably many others who deserve my gratitude, but they might have introduced themselves at times when stress prevented me from retaining their names or titles; if you're one of them, please accept my belated apologies.

Like many of my newfound peers, I was clueless when it came to advance knowledge about the difference between cervical, thoracic and lumbar injury levels and the variety of causes besides the traumatic injury that paralyzed me. Once I understood the difference, it became easier to understand which of the aftereffects of paralysis would be most likely to impact me and those who shared my life.

Information was shared about proper bowel and bladder care, the importance of daily range of motion, the possibilities for a variety of sexual activities, the frustrating processes required to obtain Durable Medical Equipment and supplies through different insurance programs and how to work with the agencies that provided funding for vehicle modifications, assistance with higher education or even employment. I now know that each of us who were in that rehab ward at the time received slightly different versions of that education based on our particular characteristics, our future plans and types of injuries.

Even though those educational efforts were important, the really important issues that I have dealt with on a regular basis were those outlined in the warnings about the many types of illnesses and injuries that were likely to befall me due to being paralyzed. Many of those "secondary conditions" have become regular visitors to my life, returning on a repeated basis in some cases. Each of those times provides a valuable learning experience that hopefully will be a benefit if the illness or condition returns. No matter how much reading I do in advance, I am always hopeful that the more serious issues will be a nonissue because of scientific advances that have occurred in the interim. Unfortunately, I am usually wrong.

For anyone entering into this situation for the first time, my advice is to pay attention to every bit of information and advice provided and follow up on complications immediately if they do happen to occur. My goal has always been to remain healthy so that I can someday leave this world in the same manner as many of my peers in my age group who are not living with paralysis.

© 2017 Michael Collins

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.