Z. REHAB V CURE
Any cure is still a long way off. In addition, both cure approaches currently being studied, the stem cell work and neuro-plasticity work, will firstly work for the newly injured. This means that if you are a complete quad now, by the time there is a cure you will be a long term quad. Therefore, its unlikely that any of the neuro-plasticity or stem cell techniques they are working on will be available to you. So by all means keep hoping for a cure if that helps you get by, but do not let it stop you living as richly as you possibly can right now.
When I was in hospital after my accident there were guys in there there who refused to accept their diagnosis as ‘complete’, and kept saying I’m going to walk again. They never did. All they did was delay their return to the world and made sure that when they did return to the world they were in worse shape than they could have been.
There were also guys that were incomplete. Many of these guys did walk out. However, the ones that worked hard to maximise the function they had got out faster and in better shape than the ones that moped around.
That was over 25 years ago. More recently there are a bunch of programs claiming that new research in the area of neuro-plasticity means that maybe the complete guys who insisted they would walk again were right. The most prominent of these programs is called Project Walk.
I do everything I can to be as independent as I can, as I have said and demonstrated throughout this site. The question for me is have these Project Walk people got anything to offer me that I don’t get by keeping getting fit and strong, learning to push, transfer, and drive, and getting a job? Have these Project Walk people actually got a genuine product to offer or are they just trying to take my money?
To answer that question I have attempted to look at the evidence. Neuro-plasticity is a relatively new field, however, my understanding is that the situation of a complete spinal injury is entirely unlike that of an incomplete spinal injury or a brain injury. In those cases it is clear that recent research shows central nervous tissue can to some extent regrow and/or re-route itself and that repetitive movements and other activities help that regrowth. In contrast, there is no clear biological basis for an expectation that someone with a complete spinal injury will recover movement or sensation below their level of injury. That is because there is no evidence that it has ever occurred. This makes sense because there is no route for the nerves to follow to reconnect even if they can be stimulated to grow.
However that is just theory. Project Walk and the others have more than 15 years practice behind them. So I can imagine a relatively easy study that would persuade me these methods are worth investigating. All that would be required is for an independent outfit to look at the data on the outcomes of the people the Project Walk type of programs have treated, and compare the outcomes their patients achieve with a similar population of spinal patients not treated by them. ‘Outcomes’ could be measured in any number of ways including in terms of health, wellbeing and socio-economic status, and/or in terms of physical functionality. If such a study demonstrated that their patients do better in one or more of these ways, even if it contradicted the biological theory, it would require serious attention.
Unfortunately, despite being challenged to do just that back in 2004 by the independent evaluation linked to below, Project Walk and similar outfits have not been willing to provide their data as far as I am aware. This means no study analysing the difference in outcomes between comparable groups of patients receiving different treatments has been undertaken as far as I know. Therefore, I have been unable to find any evidence that programs such as those have anything to offer me beyond what I have achieved through the methods documented on this site.
On this basis it seems to me that with the current state of knowledge the path to maximum functionality for C6s is learning how to do everything you can with the movement you have. That means exercising the muscles you have to get them as strong as possible, and practicing all your skills to become as independent as possible. Spending time and money on walking machines and the like might be fine, if you have the money, and it does not distract you from getting on with life.
The economic evaluation of the SCI Australia ‘Walk On’ program (link below) beautifully illustrates this point. It shows significant economic benefits from greater independence and strength as a result of a regular exercise program. That is absolutely as I would expect from my experience. People are getting out, doing exercise, getting stronger and more confident. I would expect them to be more hopeful and more independent as a result. It does not show that to create these benefits the exercise program has to have anything to do with standing or walking, and it does not show any evidence of movement or sensation recovery below the injury level in people with complete injuries.
By all means pay someone to help you stand up every now and then if you want to, but don’t let it stop you learning to transfer
Here’s what the experts say
CLICK HERE for Project Walk’s attempt to justify itself in plain english. It uses the words ‘may help’ and ‘highly trained specialists’ a lot in its attempt to sell its services. If you click through to their research page and read the scientific version you can see why. Not one paper listed provides any evidence of motor or sensory recovery below a complete injury.
CLICK HERE for an economic evaluation of SCI Australia’s Walk On program
CLICK HERE for the 2004 independent evaluation of Project Walk. It raises a lot of questions, and it appears to be the only independent evaluation out there. If the approach really works why havn’t they let someone access their patient outcome data during the last 10 years to answer the questions raised by this 2004 review?
Rule number 26 – If you just sit around waiting life will pass you by