Living On The Brink Of A Cure

Posted by Michael Collins in Life After Paralysis on May 21, 2015 # Health

If there was ever a good time to become paralyzed with a spinal cord injury or from some other reason, this may be it. Paralysis itself is never good of course, under any circumstances, but the timing happens to be right when it comes to counteracting the damage that causes paralysis. Newly injured individuals today are being treated by a generation of medical professionals who know that treatments that could result in a return of function are being developed and tested in laboratories around the world.

It hasn't always been that way. During the first few months of my life with quadriplegia 27 years ago, much time and effort was spent convincing me that my life as a person without wheels was over and I needed to get serious about planning the next phases of my life, which involved this wheelchair.

They were convincing, so I did get used to that idea. I often wonder if I would have done anything differently if some of those medical professionals had tried to encourage me with the hope that there was the potential for a cure in the future, and that I should keep in shape to be considered for treatment if that day should actually come.

For many of us injured decades ago, it is likely that whatever cure "treatment" is developed will not result in us actually walking again. I am a prime example of the reasons for that. My body is no longer in the kind of shape that lends itself to walking, as I am overweight and my legs and arms have atrophied as muscles disappeared from lack of use.

In all of the demonstrations of people with paralysis walking that I have been able to view, they appear to have at least decent upper body strength and the ability to move legs or feet to some extent. In my case, it would take more than an exoskeleton or standing frame to get me moving down the walkway in an upright position.

Another factor that will probably enter into the decision of who will get to benefit from all of the research that is taking place today is cost. All medical procedures are expensive, especially new ones that have cost laboratories millions of dollars to develop even before they have been approved for testing on human subjects. After that there is even more cost involved in gaining final government approval and finding doctors, clinics and hospitals that will purchase the products and return the earlier investment in research. I am sure that the list of those waiting for a cure will be very long, so all of us at the bottom of the list -- those less likely to walk -- should bring plenty of patience with us when applying for treatment.

With the current lengthy processes, denials, delays and multiple layers of approvals required to get Medicare or other insurance providers to pay for such basic items as a sufficient number of catheters or the proper type of wheelchair, it may be necessary to have private financing in order to participate in whatever cure therapies are eventually available. The opponents of the Affordable Care Act made a big deal about the potential for the creation of "death panels" that would decide who would be eligible to receive such things as expensive organ transplants; instead, I believe that the delays and repeat denials within the current approval process will make such panels unnecessary.

When I get frustrated while waiting for approval of a claim or repair, I find that it helps if Ienvision the person doing the approvals as similar to "The Great Oz" hiding behind a bureaucratic curtain somewhere. In reality, I know that individual is not an all-knowing entity bound to make the right decision, but instead is likely just a nameless bureaucrat slogging through a mountain of claims in a sea of cubicles. Even with the calming effect of that image in mind, I'm sure that my blood pressure would be a few points lower without the frustrations caused by waiting for approvals from the medical bureaucracy.

Okay, so if I have given up on walking, then why am I still looking forward to cure treatments being approved? My optimism is due to the promise that other types of improvements short of walking will result from much of the lab work that is taking place today. I may able to benefit even if I won't walk again.

As reported in the most recent blog by the Reeve Foundation's research guru, Sam Maddox, tests of the transplantation of stem cells into the spinal cords of several individuals had no negative consequences. There was at least some return of sensation and lessening of the impact of the disability in some of the test subjects. That is great news, as return of such basic actions as bowel or bladder control and sexual function can make a huge difference in the quality of life of someone who is paralyzed.

The return of sensation in order to identify areas of pain early enough to avoid pressure sores has the potential to save millions of dollars and countless lives each year, so I will take some of that if it becomes available. I would also love to have more strength and dexterity in my arms, as well as the ability to open my hands and flex my fingers.

This news does not just benefit me and my peers who also have a spinal cord injury. There are many other diseases and disabilities that might be impacted if scientists are able to rebuild the damaged nerve pathways that control our movements; those potential beneficiaries include people who have Multiple Sclerosis, Alzheimer's Disease, ALS, Cerebral Palsy, Primary Lateral Sclerosis (PLS), Muscular Dystrophy, Parkinson's Disease and similar disabilities.

Until now, the hope that researchers might actually find some cure for paralysis has been just a glow on the horizon. Today that light is getting brighter.

If, like me, you have been pessimistic about your chances of walking again, take heart: smart people wearing lab coats are looking out for our interests too. Hopefully we can convince Congress that this research is important, and needs to continue being funded.

© 2015 Michael Collins | Like Mike on Facebook

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.