The moment you realize that the world as you knew it suddenly means nothing and has been completely flipped around cannot be put into words. I still remember the moment when I realized things will never be the same again for me. That moment was shared with a paramedic trying to reassure me that everything was going to be “all right.” Certainly the greatest understatement I have heard in my relatively short life thus far.
Being located relatively close to Toronto I was sent to Toronto Rehab or as most people know it, Lyndhurst. Lyndhurst is a rehabilitation “hospital” for those recovering from spinal cord injuries or diseases. While the lucky few have a short and successful stay, unfortunately for the most of Lyndhurst’s patients this is not the case. It is one fraught with insurance battles, caseworkers and home renovations. Somewhere in between that combo is your patient education as you learn what has happened to your body and why exactly it isn’t recovering as fast as it should be or recovering at all.
Snake Oil in a Bottle!
Then somewhere along the line you will hear about stem cells and the miracles that may be possible in the future. I previously wrote about stem cells back in mid December but that blog entry was written with my curiosity in mind. Unfortunately, a lot of people cannot handle the emotional trauma from having their life turned upside down and start “grasping at straws.” Those “straws” tend to be something related with stem cell injections or some other injection into the body with stem cells added. Then there are the people who also take advantage of the horrible situation that a newly injured person is in.
As with anything claiming to be the latest and greatest “snake oil” in a bottle, there are going to be people promising false hopes and playing on human emotions. It is only natural that you’re going to be emotionally vulnerable during this new period in your life and open to new ideas and schools of thought. One of the most promising ideas for a cure to spinal cord injury as well as many other neurological disorders requires the injection of stem cells. There are a few different main types of stem cells with the thought that cells from the umbilical cord being the “best.” Unfortunately, the United States has a on-again and off-again relationship with funding and backing of this research due to a host of reasons which I won’t get into here.
Proverbial Magic Bottle
This leaves new patients and other people who suffer from chronic neurological disorders searching for any hope that is out there. The Western medicine world has a cautious, slow and sometimes arrogant approach that new medical discoveries are either a fluke or incorrect. So many people have decided that going abroad and getting their own treatment by paying a huge sum of money to a private source in a foreign country is the best bet. Their adventures are fueled by previous patients claims that they have recovered movement or feeling somewhere in their body. However, there is no universally recognized database or testing method for these people looking and paying for treatment. Most recently the National Post ran an article about a trio of men arrested in the United States for selling stem ‘miracle cures.’ With a fourth man Lawrence Stowe, still at large and was the “Doctor” in the scheme.
This group of four men “marketed, promoted, and sold stem cells” for the treatment of several diseases through front companies. While the arrest is great news for those that are honestly researching in this field it makes one wonder how many other fraudulent front companies and victims are out there but too afraid or embarrassed to come forward. Almost a week later the reputable TV show 60 Minutes ran one of their investigations of another case where a mother and father brought their son diagnosed with cerebral palsy to a “clinic” offering stem cell injections. For some time after the injection Gary and Judy Susser, the mother and father, noticed next to no gains from their son. This was another case of an organization preying upon the hopes and dreams of a family with nothing but good intentions.
The investigation then continues to research and follow one Dr. Dan Ecklund, a now fraudulent doctor whose medical license was revoked and denied in 2005. The investigation follows and tries to understand how and why this “Doctor” could and would take huge sums of money from families being promised miraculous recoveries and gains for their loved ones or themselves. It is an excellent insight into the underworld of 21st century snake oil charlatans.
In this 60 Minutes web video interview extra, it is hard not to spot the outlandishness of Mr. Ecklund. It is almost comical in his claims that overnight one of his patients went from being barely able to walk up a driveway, to climbing a mountain the next day! It is also funny to see him say that the potential side effects of an injection to the lumbar part of the spine could be a headache. For something so serious as a lumbar puncture and for the first thing to come to mind as a side effect could be a headache I couldn’t help but laugh. I am certainly no Doctor, but, baby Aspirin have more side effects than that! There are a few good clips from the investigation ranging from just under 2 minutes to over 10 minutes in length. At this time I cannot find the whole show but I will update this post and blog once I do.
Even from watching that small clip you can see how criminally cunning these people and organizations are that operate in North America let alone other countries with less of a watchful eye. There is a great resourceful website, CareCure, for those with spinal cord injuries in particular, but also beneficial to others looking for help or information on brain injuries and a host of other neurological diseases and disorders. Over the years I have personally witnessed (online) many people go for treatment to questionable locations spending anywhere from $50,000 well into and over the $100,000 mark. I would say that close to all of the people who do follow up do not report any significant gain in feeling or function. The website is an initiative, and to some extent sponsored by Rutgers University, with Dr. Wise Young and other spinal cord injury nurses often cautiously advise people to stay away from these suspect foreign organizations that offer seemingly so much potential but with little documentation.
That is not to say though that a stem cell “cure” can only come from North America or the Western world. As one of the other first world country powerhouses involved in many other industries, South Korea, is now funding research after a public scandal broke in 2005. It was revealed at the time that pre-eminent scientist, Hwang Woo-suk, had manipulated his research data on cloning stem cells. But now South Korea is once again funding stem cell research after President Lee Myung-bak said “while we were faltering in our quest for stem cell research, other nations streamlined their regulations and aggressively expanded their investments in research,” to try to make stem cell research a “core new growth engine”. this means quite a lot to the stem cell world as South Korea is Asia’s fourth largest economy.
So while there are somewhat questionable suspects offering various “cures,” there definitely is hope that various countries, including Canada, are trying to make stem cell research part of their medical industry. So it will be interesting to see what is coming down the pipeline in the future as fictitious criminal activity declines and promising ethical research rises to the forefront. In the meantime, I have found that hard work and continuous physiotherapy is the best method to regain former mobility, movement and function.
Here are the links to the 60 Minutes Internet web video extras:
Stem Cell Fraud: A 60 Minutes Investigation
Hidden camera interview with stem cell Doctor
Claiming a stem cell cure
“There’s no substance to anything he said”