Top 10 Functions People Living with Paralysis Would Like to Regain
If you were living with paralysis, and you could regain one function right now, what would it be? That is what the Christopher & Dana Reeve Foundation’s web poll asked, and over 1,000 people responded. What would you guess? Walking, right? The answers are surprising.
The Reeve Foundation conducted this very unscientific web poll as a way to start a conversation. Our experience is that many people who are not living with paralysis do not understand the complexity of spinal cord injury. The hurdles a person living with paralysis faces go far beyond not being able to stand, move freely, and walk.
We want to use the results of this poll to better educate people, who are not living with paralysis, about the other struggles associated with paralysis: body temperature regulation, chronic pain, respiration, loss of bowel and bladder control, skin breakdowns, loss of sexual function…
It’s important for friends and family to know, and it’s important for people living with paralysis to be heard.
Our poll of over 1,000 online users showed:
Use of legs 28%
Use of fingers/hands/arms 23.5%
Elimination of constant pain 8.2%
Control of spasticity 1.2%
It’s especially important for researchers to know what the priorities are.
Kim Anderson-Erisman, Ph.D., Director of Education at the Miami Project to Cure Paralysis, wanted to find out the priorities, for the sake of the researchers, when she conducted her scientific survey published in 2004 in the Journal of Neurotrama entitled, Targeting Recovery: Priorities of the Spinal Cord-Injured Population.
She felt, "In order to improve the relevance of research in this area, the concerns of the spinal cord injury population must be better known and taken into account."
Dr. Anderson surveyed 681 people (51% quadriplegic, 49% paraplegic) and found that:
regaining arm and hand function was most important to quadriplegics
regaining sexual function was the highest priority for paraplegics
improving bladder and bowel function was of shared importance to both injury groups
The survey got into other areas as well finding that the majority of participants indicated exercise was important to functional recovery, yet more than half either did not have access to exercise or did not have access to a trained therapist to oversee that exercise.
She concluded that, “The data from this survey demonstrate the preferences of the spinal cord injured community in terms of the importance of regaining partial functional recovery to the quality of life.”
And Anderson’s recommendation to follow researchers was, “Those who use animal models should be encouraged to adapt those models and collect data on more translationally relevant outcome measures … Though many of these issues will be quite difficult and challenging to unravel, the value of the research that is done will depend on its relevance to these problems that strongly impact quality of life.”
“Basic scientists are not typically trained to address the psychological, social, and economic issues resulting from SCI,” says Anderson, “but there remains a responsibility to be aware of these problems because of the impact on physiological dysfunctions and quality of life. Restoring any amount of physiologic function will lead to an equivalent increase in independence, and this will have a profoundly positive effect on the adverse psychological, social, and economic factors associated with the SCI population.”
Take the time to read Dr. Anderson’s paper. It’s in plain language and she delves into much more detail.
What function would you like to regain?