It’s the start of another year, but some things remain unchanged. At this moment, thousands of my colleagues are experiencing the effects of a glut of health conditions that can result in premature death and the onset of diseases most people will never face.  We wait, impatiently, for research scientists to discover the elusive cure for paralysis. That cure is unlikely to help many of us who are wheeling around today if we are so out of shape and unhealthy that we are seen as not able to benefit from whatever cure protocols are discovered.

It’s time to shift gears and assure that today’s million-plus SCI survivors enjoy quality lives, and normal lifespans. Pushing a lightweight chair around or twiddling a joystick all day is no substitute for the walking, running and gym time enjoyed by our non-disabled peers.  When was the last time you saw accessible exercise equipment in a gym or fitness club? Instead, thousands of us are overweight, diabetic, and carrying around artery-clogging cholesterol levels that escalate daily. 

Too many of us face the early onset of heart disease and the impaired circulation that leads to edema, hypertension, blood clots, strokes and other complications.  Dietary habits that would do an NFL lineman proud have no place in the life of someone who enjoys some level of paralysis, yet I watch many of my friends super-sizing their cheeseburgers and fries while enjoying a few beers with the guys on the weekend.  An educational effort is overdue, and I’m losing too many of those friends in the meantime.

Besides educating our peers, a concerted effort needs to target the mainstream medical community--especially the internists and general practitioners we visit for routine care.  Neurologists, urologists and physiatrists (rehab doctors) understand our paralyzed bodies and related health needs, but they are not who we visit for our routine illnesses and periodic checkups.  Instead, we visit clinics, emergency rooms and our local “family” doctors, who are used to dealing with the non-disabled public. 

Lack of general knowledge about the maladies peculiar to SCI and other types of paralysis is compounded by the very inaccessibility of the average medical facility and its testing equipment.  Those of us unable to perform an unassisted transfer to a lofty examination table may never know the pleasure of feeling a paper covering beneath our bare backsides.  Tests and treatments performed in the confines of a wheelchair are no substitute for similar procedures “enjoyed” by our friends and family members who don’t need accessibility and can lift their own feet into the stirrups.



What‘s being missed?  Those of us in our “middle” years should be receiving routine screening that is normally performed on exam tables or with more complex equipment.  Men my age should have periodic digital exams to detect prostate problems, and women need mammograms and pelvic exams.  All of us should be getting checked for skin cancers, osteoporosis, pressure sores, and the general condition of our bowels and urinary tracts.  Having access to a prone surface makes such exams much more likely.

Researchers will eventually find a cure for SCI and other paralyzing conditions, especially if they continue to have access to the stem cells they need for research.  Future generations of active people will be able to get back to a “normal” lifestyle after suffering what would be a disabling injury today.  Scientists will learn why irritating catheters cause bladder cancer, discover drugs that improve function, and find new types of antibiotics to combat the many varieties of microbes that reside in our urinary tracts.  They will gauge the impact of our sedentary lifestyles, and develop seating systems needed to keep us healthier, longer.  The unique needs of people with some level of paralysis might even be made a part of mainstream medical education.

The U.S. Access Board is in the process of finalizing guidelines for accessible medical equipment. It will take more than wider doorways, lowered tables and accessible equipment to solve this problem. Every medical practitioner should be prepared to provide first-class care to every patient—even if they use a mobility device--but first we need to fix the simple things. 

My own experience provides an example of a gap in technology that’s far easier to correct than access to mammograms or MRIs. Periodic weighing to detect sudden shifts in body weight is an important indicator for several diseases.  It’s also clear that those of us who overeat, don’t exercise, and weigh more than our ideal weight are asking for trouble as we age.  Despite this common knowledge, none of the doctors’ offices I’ve visited in the last few years had a scale that would accommodate me.  I do know the combined weight of me and my wheelchair, as they weighed us together when I signed up and qualified for paratransit eligibility. Now, if I can just find a doctor’s office that will separate us for weighing, I will learn if I’ve gained any weight in the past 24 years.

Unfortunately, I think I know that answer already.

© 2012 Michael Collins |