Elliot Joslin, one of the father’s of modern diabetes care, once said that the diabetic who knows the most lives the longest! Certainly for most people with spinal cord injury, brain injury and other major disabilities the same is true. You could easily say that the “para” or “quad” who knows the most lives the longest.
So where does this search for the holy grail of knowledge take us? There are so many quack sites, e-mails and articles out there that it is difficult to know who and what to trust sometimes – whether you are a person with a disability, whether you live or care for someone who is or even if you are a professional.
This time around I thought that I would plug three incredible sources of knowledge that you could look at tapping into – each of which offers a treasure chest of insight and wisdom to the novice “disabilities crusader”.
Firstly, you could go on-line and visit the home page of ICORD – the International Collaboration on Repair Discoveries (www.icord.org). While this site does offer some great information of what is happening in the non-cowboy world of repair and regeneration research, you will find unbiased, factual and valuable guidance on day to day care and living.
One really good feature is the downloadable article entitled: Summary Document for the Experimental Treatments for Spinal Cord Injuries: What you should know if you are considering participation in a clinical trial – which is available in a 10-page version if you are like me and want to skip to the chorus, and a more detailed 40-pager for those of you with a hearty appetite for knowledge. While you may well not be participating in a trial, this article provides some fantastic guidelines on how to approach new treatment or research claims and work out if you are dealing with a cowboy or not.
Another really useful item on the site is the link to SCIRE – Spinal Cord Injury Rehabilitation Evidence – which is an insightful and carefully prepared summary of the evidence for and against almost anything you could do, or have done to you, in SCI rehabilitation and care; what works, what does not and how to tell the difference. This page is a goldmine!
While we’re talking about the mother lode, the other site that you cannot ignore on your quest for life-saving knowledge is the PARADOC site – www.paradoc.org. This amazing site is an electronic library of articles, guidelines and resources for almost any aspect of SCI. It offers some less academic material than the ICORD site, and in some ways is easier to use and absorb, but still contains reliable information. This too is a site you should not miss.
Which takes me on to the third source of information – ISCOS 2008 – which is really aimed at health care workers who are engaged in providing care for people with SCI – doctors, nurses, physiotherapists, OT’s, psychologists, social workers, prosthetists, whoever. Even if you are not one of these, you should know about it and tell the people who are caring for you and make sure that they do – and that they get there.
ISCOS 2008 Durban
Between 30 August and 4 September SASCA (Southern African Spinal Cord Association) will host the ISCOS (International Spinal Cord Society’s) 47th Annual Scientific Meeting in Durban at the ICC. This is like the World Cup of professional care for SCI and will see all of the world’s experts converging on Durban to network, learn, share and present the latest information and developments in the field of SCI care.
This incredible event has been supported by ISCOS, WHO and the South African Department of Health and will include a 3-day special course in SCI care for health care workers in the field of SCI on the African continent.
There will be papers on neuropathic pain in SCI, regeneration and repair, how to set up systems of care for SCI, how to do prevention and health maintenance in SCI, Osteoporosis in SCI, mental healthcare in SCI, SCI and HIV and much, much more. This event is a once-in-a-lifetime opportunity for South African health care workers to meet with the world’s SCI Guru Network and learn from the best, and really should be missed by no one. If you know of any professionals who are engaged in SCI care, please let them know about it and see that they attend. The meeting is for health care professionals (but will have QASA representation) and is not aimed at the lay person, so if you are not involved you will probably find it heavy going – but your health care workers should be there!
You can send anyone you think should be there the web link – which is www.iscos2008.org.za – go and have a look anyway.
Once you get into it, all you will find that there is a great wealth of information about SCI out there – but it won’t come to you. Living with SCI is an active process that demands your time, energy and concentration. Spending time staying up to date with relevant, accurate and reliable information is a drag, but there is no doubt it is an investment that you will not regret. Go and have a look at these sites.
Remember; the “para/quad” who knows the most, lives the longest.