Cure vs care for people with spinal cord injury

March 3 2016

Kent_Revedal_cafeteria_webStem cells, Exosceleton and Cyborgs.
Things that make people raise their eyebrows. Things that make investors open their pockets. All headline news. 

On the other hand, a new design for catheters, wheelchairs or cushions to sit on. Not as exciting probably. Will definitely not make the headlines... 

But is it possible to choose between cure and care? 

Ethical dilemma
In the world of people with diagnosis or injuries there is a constant debate of cure versus care. How much money shall be spent on trying to find a cure for a Spinal Cord Injury or Multiple Scleroses, just to mention a few. How much money shall be put into making life a bit better for those who already suffer? The resources are not endless, we need to make choices and no matter what choices we make, it will affect people positive and negative. A constant ethical dilemma.

Dreaming about a cure
When I was injured in 2010 I would have put all my money in the cure section. I would not want anyone to have to go through what I experienced at that time. It seemed an easy call then. As years went by I started to change my initial thoughts. I still hope for a cure for my injury and for others who suffer from MS, Parkinson or muscular dysfunctions. I still wish that no one would have to go through what I am going through every single day. Make no mistake about that. On the other hand, millions like me are living with these kind of injuries right now. We will most likely not benefit from any major breakthrough. All the effort that is being made to make our life a little bit more endurable makes a world of difference to us. Fewer UTIs, less pressure wounds, lighter and better designed wheelchairs that are more gentle to our shoulders, necks and backs.

The world of work
In the last 30 years we have seen an increasing number of people with various functional disabilities taking part in the world of work, instead of being full-time retired or even in an institution. One of the reasons for this possibility is the increased focus and development of the care part. Better help, better tools and for many, better assistance makes it possible to partake in work life more or less on equal terms.

A full life
From a pure economic standpoint I would guess it’s a win for society. Instead of paying people for being retired, these people can now get back to work, at least part time, and feel that they can contribute to our society and even to the GDP. But more importantly, it makes the person feel great to be able to do something meaningful. Instead of sitting at home doing basically nothing; the person has a job and co-workers. A social life. Even though my injury or diagnoses will always limit me and probably make me stand out, I can still take part in a social life like others. Still be part of the Friday AW.

Dignity
All those small inventions that never make the headlines are things that help me and others to enjoy a better day-to-day existence. I can work, I can travel, I can socialize. To put it short - DIGNITY! From that comes self-esteem, belief in yourself and your own capability. This makes you feel better and makes you treat yourself better. It will also affect others’ view of you.

Still dreaming
I dream and hope that someone will come up with a cure, solution or workaround for my crushed spinal cord. I follow the different tests around the globe. There are things happening all over the world in that aspect. In Stockholm, In Miami, In Australia, just to mention a few. I hope that one day we will be able to say we beat SCI or MS. I praise all those who raise money to keep on doing that research.

Making a difference
While praising the hunt for a cure, never lose focus on the millions of us who try to make a living here and now. I want to applaud all of those companies and individuals who spend so much time and effort to make all those small changes. Just to make my day a little bit better. A little bit easier. You may not know it, but those small changes may be the difference of a day crying or a day smiling. No one may thank you for that small enhancement you do in your lab, but it changes our life a little bit. On behalf of all of us that benefit from your work, a big thank you for caring enough to make our life just a little bit better.

linkedin-icon.png Kent Revedal

 

Curious about Kent Revedal? Click the following links to get to know him in previous Wellspect HealthCare blog posts:
Searching for a bowel therapy
Take it easy—take TAI
5 arguments for Transanal Irrigation (TAI)

Topics: Spinal Cord Injury (SCI)