Understanding Spinal Cord Injury: Part 4

It's that time of the week folks... first off thank you to all of you for the outpouring of love and support. I'm humbled and honored that people are reading, sharing and receiving insight from these words. Since the blog has gone live we have had over 1,500 views so keep spreading the word! To those of you who may not know, part of the purpose of this blog is to raise money for the stem cell treatment I will undergo. Just to put things into perspective, insurance refuses to pay for it so all expenses come out-of-pocket. At 1,500 views, if each view were a different person (hypothetically), and if each of those viewers donated $20 we would be just over half-way to our goal and the treatment itself would be covered.

If you are interested in donating please read the section labeled "How You Can Help" on the right-hand column of the page. If you have any questions at all please don't hesitate to email us at the address at the top of the page. Also, there will be several fundraising events coming up in the next three months so be sure to watch for the announcement and how you can get involved. Please know that 15% of every dollar raised goes to help another person besides myself in need of treatment.

Okay, back to the blog...

This week I am wrapping up the 4-part series on Understanding Spinal Cord Injury and I apologize ahead of time if this posting is not as interesting as the others due to its less-than-scandalous content. I will attempt to share some of the more positive aspects of what is happening in the world of spinal cord injury and the amazing people out there pushing the envelope.

THE FUTURE EXPERIENCE
There are still many obstacles placed in the way of those with a disability by our society. I will touch on some of them briefly in this article, but in my effort to lighten the mood I will be dealing specifically with disability and prejudice in another posting. I will say this, it's not as bad as it used to be. More and more people are opening up. They are changing. The civil rights movement, feminism, gay rights and other subsequent causes are opening the public consciousness. It has been said that equal rights for the disabled is the last great frontier of equality and I am inclined to agree. The stereotype of the creepy shut-in alone in front of the TV and their ugly, brooding nurse watching over them is breaking down and being replaced by images of young, hard-working, athletic, open and inspiring human beings who are a vital part of the community.

The real breakthroughs are not coming from any one spokesperson, government lobby group or medical professional. They are coming from everyday people who have come face to face with spinal cord injury or other disabilities and have chosen to embrace the challenge as an opportunity. Some of the more well-known figures are people like Jesse Billauer, the first quadriplegic surfer to surf the Cloudbreak outer reef pass on the island of Tavarua in Fiji. There is Aaron Fotheringham, who despite being born with Spina Bifida, is blowing minds on the Nitro Circus Live tour, an action sports road show that tours all over the world. Aaron performs on a fifty-foot ramp-to-ramp jump doing backflips, double backflip attempts and on February 9th, 2011 in New Zealand, performed the world's first wheelchair frontflip...

 

Liza Perla-Riedel in Orlando, FL was not satisfied with the lax, over-crowded state of affairs in our current system of physical therapy when her only daughter Amanda suffered a spinal cord injury so she founded her own therapy center! Formerly Step It Up Recovery, it is now Project Walk Orlando and is going strong and changing lives. Recently I heard about a group of young Vets who, with the help of the Wounded Warrior Project persuaded their insurance coverage to pay for intense, progressive therapies. Many of you won't know what an important step this truly is, but trust me, it's big. Next week I will be interviewing Dr. Zannos Grekos about his work and commitment to finding viable treatments despite being ostracized by the medical establishment. There are so many amazing people doing amazing things I could go on and on. Sports like scuba diving, down-hill skiing, and motorcross, creative endeavors like acting, music, directing film, and blogging, the corporate and political world is opening up as well. These are just a smattering of the fields where people are starting to make their mark. I will be featuring more and more each week, but I encourage the reader to research. Find out what is happening. It will expand your world view and help you discover positive elements of yourself you never knew existed!

The greatest catalyst for these changes, the improvement in quality of life and full integration into society has been the advancement in physical therapy. The vast majority of spinal cord injury occurs between 16 and 30 years of age. These precious young people have suffered in the way I have shared in previous postings, but over the last twenty years therapists, patients and family members have begun to understand the role that positivity and hope play in recovery. Continued cardiovascular exercise, weight-bearing, electrical stimulation, stretching, healthy diet, improved chairs and mobility products, even custom clothing and fashion are making all of these breakthroughs by the people we've just discussed possible. They are more confident, stronger and able to place themselves in a position of action and personal responsibility. Organizations are steadily cropping up that are building on this new trend. Project Walk  has centers throughout the country and abroad, companies like BStrong4Life all over the U.S. and the Center of Restorative Exercise in Northridge, CA are combining the holistic spa and fitness gym business model with real, medical physical therapy with great success. Even companies who have manufactured therapy equipment in the past are offering models to be used at home as people take recovery into their own hands.

All of this progress is indeed wonderful, but the sobering fact is that demand far exceeds supply. Many of those injured simply have no idea resources are out there. To compound the problem hospitals and doctors do not and cannot truly help because in many ways their hands are tied. In the average hospital physical therapy wing the lobby is crowded with everything from stroke victims to knee replacements. Therapists are often assigned as many as five patients in one session with maybe two therapy assistants to "help". Both the therapists and their assistants were rushed through an already failing educational system and a majority only chose the medical system as a profession to guarantee job security so their level of understanding is generally limited to only the more common conditions. It is a sobering experience to go through a therapy first-visit evaluation and you know more about spinal cord injury than the therapist does. Regardless of what side of the fence you're on politically the problem is not going away with ObamaCare... or any other government care plan for that matter. What we need is to create our OWN care plan as individuals and care enough to stick to it. Now more than ever we have access to information, information that can change our lives. We must embrace self-education and trust in our own ability to make quality decisions instead of letting the media, the medical establishment, the government and religion dictate our thought processes. Before I go further though I must say this in defense of the doctors and therapists, the state of things is not entirely their fault. There are those who are working very hard who are making a difference. The reason I said before they cannot help is threefold, 1. They are over-worked and over-tired for lower and lower pay, 2. They have zero time to research, much less build a database of resources to refer patients to, and 3. They are not trained, nor are they encouraged by the current medical system to encourage, educate and support patients into a place of self-reliance and innovation.

As an addition to Part 3 of this discussion I posted an informative article on the cost of living with a spinal cord disability. I am reposting it here. I highly recommend each of you read it as it applies to this topic. The average cost of these progressive therapy centers is $100 per hour. Coupled with the fact that they are spread throughout the country many spinal cord injury patients do not have easy access. Because most are on some type of disability insurance that refuses to cover these facilities many patients establish a constant schedule of fundraising, travel and therapy then do it all over again just to get what they need year after year. Just one hurdle is the issue of travel. It is not widely known that the FAA has such a powerful government lobby they have negotiated an exemption for the airlines from most ADA accessibility guidelines. One can easily see that while tremendous strides are being made it is going to take a broader shift in the fundamental way we approach the issues of medical treatment, therapy and personal independence to fully meet the need.

Of course the main focus of this blog and the exciting topic on everyone's mind is stem cell research. Physical therapy will play a major roll in recovery for many years to come, but regenerative medicine is the future. 3D printers printing out exact genetic copies of bones and inner organs, artificial limbs with nerve function, stem cells taken from a simple blood sample and cells responding to sound and light are no longer the stuff of sci-fi film. They are very real probabilities in various stages of clinical testing around the world. What if we could mend a broken bone with light? What if spinal cord injury became a superficial injury treatable by an injection of stem cells and sound waves? What if a diabetic could print out a new pancreas? It's coming, don't laugh, it's coming.

Advances like these are the reason it is so vitally important to take actions we can in our own lives now. We may not live to see all of this, but our children and grandchildren will. Health and longevity bring great power and with great power comes great responsibility. In order to be responsible we must teach value. To truly value something we must know it, and know it well. Christian mystic Max Heindel proposed that our bodies were the most developed part of us along the evolutionary spectrum and that our souls had many more eons to go before reaching perfection therefore respect and care for the body is of utmost importance. Plato and Aristotle, along with many ancient philosophers taught that the human form was a microcosmic model which mirrored the macrocosmic processes in nature. Whether or not you believe this to be true as a point of fact it does not matter, but was does matter is the general underlying message. Know thyself, care for yourself, your neighbor and nature with the utmost respect. In tangible terms I'd encourage the reader this way... start small, take time to learn something. Start the process of studying your own patterns instead of others. Ask yourself the hard questions and don't flinch. Is your body or mind unwell? What is you body or heart trying to tell you? What about your lifestyle, diet, the company you keep and how you spend your time is draining the life energy out of you? When was the last time you educated yourself on a topic you know nothing about? When was the last time you cooked a meal with your kids? These things tell us a great deal about what we value and most of all what we value in ourselves. The only constant in the Universe is change and our level of self-realization that fuels our sense of passion will determine whether those changes will be positive or negative. We cannot become the heroes of our own journey like the Jesse Billauers and the Liza Perla-Riedels and those like them until we value this precious life we are given. All of it.

Thanks for reading...

Comments

  1. Amen brother! It is amazing what people can do when they put their minds and their hearts into it. I've mentioned our old friend Greg Bedan to you before. He is a member of the Indiana house of representatives, a major ADA advocate, and a marathon rider (he has a special bike that lets him use only his arms) And I've seen what you've done over the years as well and it just blows my mind. Keep living to the fullest!

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  2. Caleb, I'm just now catching up. Saying that I'm moved and inspired is an understatement. Thank you for sharing your raw, excruciating, and beautiful experiences.

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