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Thread: 3E-CAUTION: Equipment, Experiments, Exercise

  1. #1

    3E-CAUTION: Equipment, Experiments, Exercise

    3E-CAUTION: Equipment, Experiments, Exercise

    After viewing some interesting comments made throughout these posts, I felt inspired to op-ed. I wish only I could channel the founder’s eloquent word composition to best execute this.

    Most of us will agree on the importance of safety in the treatment of SCI - clinical trials (experiments), rehabilitation (exercise), or utilizing specialized therapeutic technologies in the home (equipment). We don’t want to see anyone lose function, lose hope, or in some cases, lose their home. I am sure most of us recognize that entities do exist to misguide, mis-market, and inappropriately provide "medical" advice that can have dangerous consequences (psychologically, physically, monetarily etc). One must approach each of these (3E's) with heightened caution, as we live in an age in which certain entities exist only to profit from potentially vulnerable consumers.

    Let me expound on this a bit, as I don't want to blur my point.

    1) Equipment. As an example, I am thinking of the seemingly endless stream of infomercial exercise products crowding our televisions, isle ways, and even bedrooms. Products with exceptional claims to heal just about everything and yet have little to no evidence to support such claims. Such products can and should raise a bright red flag. In rehab, you often find these products extremely expensive and attached to marketing/reps eager to save you money, and cure what ails you…but declining comment on cost. Posting pictures of me standing in my KAFOs after 20 paralyzed years and then claiming the KAFOs enable me to walk is grossly misleading. The acutely injured 18 year-old and his parents are misled to think these KAFOs will enable functional ambulation again, not understanding the nature of orthotics or the pathophysiology of SCI. Yet, I have seen an article in a popular magazine with such an ad. Now, purchasing a magnetic bracelet for $30 is one thing…buying a $20,000 Combofit for home use is another.

    2) "Experimental Procedures." I use this in quotes because it is misleading for us to refer to many of these procedures as experimental or as clinical trials. Scientists/researchers/physicians performing “experimental procedures” or “clinical trials” should at the least have a strict protocol employed and even the most basic of controls. I am quite sure many will disagree, but the typical IRB in the United States serves an extremely important role in protecting the health and safety of human subjects. Nevertheless: high cost, no published data, red flag. Wise has covered this topic quite thoroughly.

    3) Exercise & Rehabilitation. We continue to witness the rampant expansion of “recovery-therapy,” albeit often non-scientific and potentially unsafe. SCI-related exercise facilities are sprouting around the United States and making incredible claims with little evidenced-based support. Please don't misunderstand my point here, as I am confident that many of these exercise facilities are legitimate and perhaps beneficial. We are at a point, however, where we must proceed with extreme caution when for-profit entities make claims such as those contained within the "Motivated Care" article posted within the Exercise forum. To claim significant cost-savings over established healthcare entities and then decline to state the cost is suspect at best. Identifying a program as "Rehabilitation Therapy" implemented by "Physical Trainers" should send up more flags than the UN anniversary celebration. We cannot deny that "trainers" without proper education in SCI could cause irreparable damage to their SCI clients. Please consider, how were these “trainers” trained? Are they personal trainers that received certification online? Are they CSCS trainers that know how an able-bodied athlete can build muscle? Even the most skilled certified athletic "trainers" working for professional sports teams have extremely limited SCI knowledge (as do many physicians for that matter). Alternatives are good, but one must carefully examine any rehab or exercise program before spending exorbitant amounts of cash on potentially unsafe, untrained, for-profit entities.

    I have found a favorite quote since joining the CareCure forum and I believe it sums up my point, “As the cast of villains in SCI is vast and collaborative, so too must be the chorus of hero's that rise to meet them” Ramer et al 2005. Those of us living daily with SCI must continue to educate and inform ourselves beyond what is reasonable. In doing so, we will systematically form a band of pioneers that will blaze a marked path to recovery.

  2. #2
    Quote Originally Posted by Pro-SCI
    3E-CAUTION: Equipment, Experiments, Exercise

    Most of us will agree on the importance of safety in the treatment of SCI - clinical trials (experiments), rehabilitation (exercise), or utilizing specialized therapeutic technologies in the home (equipment). We don’t want to see anyone lose function, lose hope, or in some cases, lose their home. ...........

    I have found a favorite quote since joining the CareCure forum and I believe it sums up my point, “As the cast of villains in SCI is vast and collaborative, so too must be the chorus of hero's that rise to meet them” Ramer et al 2005. Those of us living daily with SCI must continue to educate and inform ourselves beyond what is reasonable. In doing so, we will systematically form a band of pioneers that will blaze a marked path to recovery.
    I agree completely!!! Your post is well written. I like the quote too (the article is also worth reading). I like the 3E's, I will borrow this term in the future (and give credit where credit is due).

    Wildwilly
    “As the cast of villains in SCI is vast and collaborative, so too must be the chorus of hero's that rise to meet them” Ramer et al 2005

  3. #3
    Well put.

  4. #4
    Thank you for reminding us to use caution when making decisions re SCI therapy, etc.

  5. #5
    I agree with you 100% in regards to using caution and doing your research. May I ask what your background is with SCI's? I think it is important to approach all apsects of the health care systems with caution, not just the 3E's.
    Last edited by scitrainer; 10-22-2007 at 06:08 PM.

  6. #6
    Quote Originally Posted by scitrainer
    I agree with you 100% in regards to using caution and doing your research. May I ask what your background is with SCI's? Have you engaged in an exercise based recovery program or used adaptive equipment? Why non-profit? Is your doctor or therapist non-profit? I think it is important to approach all apsects of the health care systems with caution, not just the 3E's.
    I am glad to provide you with a bit of personal history in an effort to lend credibility to my post. I will answer the first 2 questions in the order presented and then provide insight to your question concerning for-profit vs. non-profits:

    1) My work in SCI has been multi-tiered over a 14 year span. In part, I have worked in rehabilitation, private-practice (exercise based/forced-use), SCI research, and product advisory. I continue to work extensively as a volunteer for numerous SCI-related organizations.

    2) Yes, I have participated in every level of spinal cord injury rehabilitation (inpatient, outpatient, and high-intensity exercise). My experience with adaptive equipment is quite broad; you can view limited examples in my other posts.

    Anyone can make claims to certain degrees of expertise. In the United States we are fortunate in that we are able to validate/verify most claims as they relate to health care professionals. Each state requires licensure, certification, or perhaps registration for those practicing medicine, therapy, etc. Having a state board for licensure etc. is important for many reasons. To further relate to my post, these state boards will monitor and investigate any allegations or claims made against licensed health care professionals. In doing so, they are protecting the health and safety of the individuals receiving care. As an example, the following state website will verify licensure for various health care professionals in the state of California:

    http://www.ca.gov/Employment/Licenses.html

    It is very difficult to determine the expertise of “trainers” without confirming their competency through some systematic means. For some, a simple on-site observation may suffice. For others, proof of SCI-specific education, training, or experience may be necessary. Again, please don’t misunderstand my use of the term “trainer,” as certified athletic trainers (ATC) do indeed require certification in most states and are recognized by most health-insurance companies.

    For-profit entities exist to generate a monetary profit and distribute the profit or dividend to its shareholders (after payroll, of course). Conversely, not-for-profits do not pay shareholders from company-derived profits. So you see, I find it reasonable to suggest that a for-profit “SCI Recovery” program with “trainers” may be existent for the purpose of monetary profit. In this, one must carefully consider the treatment application, safety, and staff competency at such establishments as they rise in popularity.

    You are correct, we should approach all aspects of the health care system with caution, not just what I have outlined. This includes both for-profit and not-for-profit entities. To quote from my post, “Please don't misunderstand my point here, as I am confident that many of these exercise facilities are legitimate and perhaps beneficial. We are at a point, however, where we must proceed with extreme caution when for-profit entities make claims such as those contained within the "Motivated Care" article posted within the Exercise forum.”



  7. #7
    Pro,
    you remain anonymous. I do agree with what you are saying in regards to researching new facilities. I understand you may have the best intentions but I can also see how your post may be discouraging to an individual who might be interested in a newer facility. I do agree with you though, i think your initial post is excellent advice.

  8. #8
    Quote Originally Posted by scitrainer
    Pro,
    you remain anonymous. I do agree with what you are saying in regards to researching new facilities. I understand you may have the best intentions but I can also see how your post may be discouraging to an individual who might be interested in a newer facility. I do agree with you though, i think your initial post is excellent advice.
    I do not see discouragement, only the need for caution and increased education. I think the following link may provide some insight into the potential dangers that can occur when education and caution are thrown to the wind. The article is titled "Threats To Hope: Desperation Affects Reasoning About Product Information". Hope is a good thing when you (or those you surround your self with) are well educated. Hope is not something that should be prayed upon for any reason. Maybe the term should be 3E's & 1D.

    http://www.sciencedaily.com/releases...0713131444.htm
    Last edited by wildwilly; 10-23-2007 at 04:20 AM.
    “As the cast of villains in SCI is vast and collaborative, so too must be the chorus of hero's that rise to meet them” Ramer et al 2005

  9. #9
    Insightful post Pro.

    WW

    Not sure I followed what the 1D would be?


    Eric Harness, CSCS
    Founder/President
    Neuro Ex, Inc
    Adaptive Performance and Neuro Recovery

  10. #10
    Caution for Desperation = 1D. I believe it is just as important and intricately entwined with PRO-SCI's well defined 3E's.
    “As the cast of villains in SCI is vast and collaborative, so too must be the chorus of hero's that rise to meet them” Ramer et al 2005

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