Recent Study on Paralyzed Rats

A friend sent me an article this past Sunday about some recently reported findings for possible paralysis treatments. I thought I should share it, for those of you that might have missed the news. The full report was published in the current issue of Nature Neuroscience, although you need to purchase the article if you don't already subscribe to the journal. You can only read the abstract for free. The report can be downloaded directly on through Nature Neuroscience website. Here's the link to the Yahoo News article that my friend sent me:

http://news.yahoo.com/s/hsn/20090920/hl_hsn/paralyzedratswalkagain

I'm left with many questions after reading this article. Although, I do realize that this article is just a summary, and therefore missing all the details. I'm very curious as to how this three part treatment could be applied to humans. I've heard of people having success by going through intensive rehab programs, such as Project Walk in CA. This specific program uses electric stimulation and repetitive movements, in hopes of re-teaching the body and help form new connections between the brain and spine. I've read about a couple of similar rehabs, unfortunately there are very few of these facilities nationwide and they're not always covered by insurance. After my accident, I did three months of rehab at Kessler, here in NJ. I have a complete C4/C5 injury. In my experience at Kessler, I felt the emphasis was put on educating people how to live in wheelchair, versus giving people hope of recovery. Therapists had several patients in each session, so it was impossible to receive much intensive one on one treatment. As for me, I felt like (due to my severe injury) they had given up on my "recovery" before I even rolled through the door. It would be great if there were more choices like Project Walk were available. I know Project Walk opened its doors in 1999. This new article speaks about treatments that appear to be similar to Project Walk's program. I'm wondering how similar the treatments that were given to the rats in this new study are, versus existing techniques some rehabs already use.

Although all research into curing paralysis is valuable (even failed treatments can give scientists insight to new ideas) I don't see how this particular experiment could benefit humans, given the fact that the rats are still unable to walk without the electric stimulation and treadmill. I'm kind of left thinking, "What's the point, if the rats can only walk when they're hooked up to the machine? What kind of applications could there be, outside of physical therapy?" One benefit that comes to mind is weight bearing, which is important because it helps keep bones strong and helps blood circulation. There are already various types of equipment being used in rehab facilities and in homes that allow for standing, such as tilt tables and standing frames. I've already witnessed people "walking" with the assistance of two or three physical therapists helping them to move their legs, while being suspended over a treadmill. Granted, the treatment I saw did not include e-stim, which this study does. In terms of everyday use, I doubt many people would be able to afford to buy all of necessary equipment. When I was in rehab the facility only had one setup like the one described in the article, and I never even saw it used (I speculate the reason was shortage of staff).

This technology could be used surgically, in the form of implanting wires directly to the muscles (internally). The person could then use a high tech remote control device (externally) to control their movements by pushing buttons. Each button on the remote would send a jolt of e-stim to a specific muscle, thus allowing the person the move. In fact, I've seen a similar device already being used, to help people with foot drop (http://walkaide.com/products/medicalcommunity/index.html) and for bladder control (http://www.icsoffice.org/publications/2002/pdf/m3.pdf). The perplexing part for me is how this technology could assist people with high level injuries, such as myself. People that suffer from cervical spinal cord injuries might not have any control of their hands, so how could they operate a remote device? I'm unconvinced that people with high level injuries could benefit from this type of implantation (outside of physical therapy). I can definitely see this sort of treatment being used for low level injuries, as they could control more complex remote control devices, which could potentially allow users to perform any number of movements.

As I said earlier, this study is interesting and I'm sure the doctors performing the study gained valuable information. I think it's safe to say that most doctors that are working on a cure for paralysis would all agree that a "cure" will most likely be a mixture of techniques, medicine and/or surgeries. It is doubtful that will ever be one simple solution, so is important that researchers explore all options. In my mind, immediate goal towards “curing” paralysis is focused on giving people back the freedom to care for themselves, which may or may not include walking. Personally, I'd be satisfied even if I couldn't walk, as long as I could care for myself. For me, walking again would be a very welcomed bonus, in terms of recovering my independence, but I'm not as hopeful for walking as I am for recovering enough mobility to not need help. I'm more optimistic about advancing therapies that could repair or reconnect the spinal cord. Although this study shows we might able to circumvent the connection between the brain and spinal cord all together, it is not addressing the real problem. I view this type of treatment as a temporary solution. However, I’m sure many people will consider this technology worthwhile for them and that we will see people using this type of approach. As for me, I rather not rely on gadgets. I'm still holding out hope for doctors to be able to repair the connections that already exist in my body and that used to perform naturally.

I did some digging & found the full study, available to read online for free:
http://www.nature.com/neuro/journal/vaop/ncurrent/full/nn.2401.html

Life; Paralyzed Exhibit, Kean University

LIFE; PARALYZED EXHIBIT

I’m happy to report that my recent exhibit opening was a big success. This particular exhibit is my third art exhibit and second solo show. The exhibit is at Kean University, in their Student Art Gallery. The gallery is located in Vaughn-Eames, which is the art building. Vaughn-Eames has two art galleries on the first floor, as well as a small theater. The opening reception was held in the Vaughn-Eames building lobby, from two to five p.m., Sunday, September 13, 2009. The exhibit will be available for viewing until October, 2, 2009. If you have friends or family that live in the area, please tell about the show.

HISTORY

I am a Kean University alumnus; haven graduated in 2003 with a B.A. in Fine Art (K-12 teaching certification). I had begun taking graduate courses in painting in 2004, in addition to working full time as an art teacher. I didn’t “pick up” a paintbrush again until late 2005, due to my accident and resulting spinal cord injury. I began painting by mouth about six months post accident. Painting gave me back a sense of independence, as there is very little, to nothing that I can do myself, without assistance. Being able to paint again also gave me an escape (mentally), that I desperately needed, during the first year and a half after my injury. I would consider the first two years post accident the darkest days of my life, especially because I living in a nursing home. At first, I was solely interested in building up my skills and trying to hone my technique using my mouth. I painted mostly still life paintings during that period. It was also during that time that I applied to join the Association for Mouth and Foot Painters.

By the time I moved back into my own apartment in January, 2007, I felt pretty confident in my painting abilities. At that point I felt that I was at about the same skill level I had been prior to my accident. That said, painting is like any skill; it requires constant practice and there is always room for improvement. It was around this time that I began painting more personal artwork. Many of the first paintings I did were meant to go to the AMFPA, so I tried to paint things that would be most appropriate for greeting cards and calendars. My personal work is based on ideas I’ve been storing in my mind since my accident.

I hadn’t felt emotionally prepared to really delve into my feeling related to the accident until I was in my home. During that same year that I moved, a committee of my friends and family members were working on raising funds for me, for a modified van. The committee contacted local papers about my story, in hopes of raising more funds for the van. It was through my interviews with the newspaper journalists that I got my first chance to spread the message about spinal cord injuries and research. It felt great knowing that a large group of people would have access to my story and I would be able to educate people about paralysis. I began receiving feedback immediately, and was very touched that people appreciated me sharing my story.

Since then, I’ve made it my mission to advocate for a cure to paralysis. Early on, after my accident, I had created a website dedicated to advocacy, but I still wished I could do more. Although I was feeling good about my painting skills, I was still apprehensive to share my artwork. I’m a very self conscious person by nature, so at first I wasn’t overly thrilled about having my story (worst yet, my picture) plastered all over New Jersey. However, so many people were working hard to improve my situation that declining the invitations to do the interviews was never an option, in my mind. After the first couple of articles ran I received so much positive feedback that it gave me the courage to try and find other ways I could use my accident to help others. I received dozens of letters and cards of appreciation and I thought, “I’ve been given an opportunity to speak, not only for myself, but all these other people that are struggling just like me. If I’m given a chance to talk about my accident or share my work I better do it, otherwise it’d be an insult to all these people that don’t have a voice.”

Thanks to the publicity for the fundraiser I was able to meet other advocates and people that worked for various art and/or disability related organizations. It wasn’t until after the fundraiser that I started thinking that I might actually be able to publicly exhibit my work. I worked hard to try and build up enough paintings to have a small body of work, which I could show. I never lacked ideas. My accident had provided me with enough things to paint about for a lifetime. I just needed time to create a decent amount of work, while still fulfilling my obligations to the AMFPA. I decided to only exhibit my personal work, because I felt it was a way for people to understand paralysis in a way my words alone could not express. My still lives help me improve my technical skills, while my personal works give me an outlet to deal with all that I’ve been through. I wasn’t interested in selling (nor am I now) my paintings. I just wanted to exhibit them; for people to see them. I know when I first started working on my paintings my family and friends were a bit shocked or disturbed by the images. I remember my dad joking with me, “How about painting another one of those nice flower paintings?” I would joke back saying, “Dad no one is going to care about a cure if I portray my life as rainbows and butterflies.” I want people to see the reality of my situation. I’m guessing those closest to me feel the pain I put into my work a bit more acutely than a stranger, but even still, my dad and the rest of my inner circle understand my need to paint and are very supportive. I often wonder if I put on such a good act that people don’t realize what I’m really going through, until they see my work and that’s why it knocks them off their guard.

MY MOTIVATION

What’s important to me is that people can make a connection to my paintings. I’ve been fortunate so far, in that galleries have been willing to display my work. I plan to keep painting and hope I can continue to exhibit. I truly believe that if people make an emotional connection with something and/or are more informed about something, that the chances of them supporting that cause drastically increases. My current exhibit is so special to me because of my connection to the University. I spent so many hours of my life on campus (the majority in the VE art building), between classes, work and clubs, that Kean feels like a second home in a way. When I was an undergraduate I worked as a freshman advisor for three years. I got to know a wide variety of staff and faculty that I might have never met, if I hadn’t worked on campus. I consider many of my old coworkers and professors my friends and I remain in connect with them. It means a lot to me to be able to exhibit at my alma mater.

This show has given me the opportunity to share my story with thousands of students. Every incoming freshman will be given a flyer with information about my show and about spinal cord injuries. More importantly, they will learn about the bigger picture of paralysis and its effects. I’m using my life as an example and it’s my hope that can relate to me and not only support a cure, but to be aware of the choices they make every day and to be thankful for every day they are healthy. As far as spinal cord injuries go, all too many occur during the college age years. I hope my story will show students how fragile our lives really are and that I can help prevent spinal cord injuries in addition to teaching about them.

I’ll never claim to be a great artist; there are many others that are far better and more talented than me. Although, having an exhibit at Kean has definitely helped me to get over some of my insecurities. This is my first show that is not related to any disability related organization. Although I’m grateful to the other organizations I’ve worked with, and support their efforts one hundred percent, this exhibit at Kean has helped me deal with my disability in a way those other organizations couldn’t. It’s given me more confidence in the power of my message. I say this, because all the other organizations work specifically with “disabled artists.” I have a hard time dealing with that label, because it always makes me wonder why people are interested in my work. I don’t want people to take interest in my work because it was painted by a “disabled artist.” I want to be confident that people are interested in my work for the messages behind them. Sometimes I wish I didn’t have to tell people I painted them with my mouth, although it is part of my life story. I feel like the work should be considered worthy on its own merit, regardless of how I created it. I fear that people might get distracted by the way I paint, instead of focusing on what I paint about. It is an inner struggle and having my first exhibit at a gallery that is open to all artists has been a big emotional boost for me. I think of my personal artwork as a tiny glimpse into my mind. It is my hope that when people look at my work they can feel what I feel, even if only for a moment. A moment in my shoes is more than enough time for anyone to realize the importance and immediacy of finding a cure for paralysis.

*Kean's Cougar's Byte review:

http://media.www.cougarsbyte.com/media/storage/paper738/news/2009/09/15/CampusNews/Unrestricting.Art-3771358.shtml?reffeature=popuarstoriestab

*My website: www.myspace.com/sci_cure

*Link to the exhibit flyer:
https://share.acrobat.com/adc/adc.do?docid=edc563a5-0c58-4db2-814d-9032983ecc3a

I Believe Inc.

Hi everyone!
I'm happy to announce that I'll be writing weekly blogs for I Believe Inc. on their website. I Believe Inc. is a non-profit organization, dedicated to raising awareness about spinal cord injuries (SCIs), improving the lives of people living with paralysis and supporting research for a cure. The organization was recently founded by my friend Rich Gaskin (better known as Professir X); with support from a small group of family, friends & fellow SCI advocates.
For those of you that might not have heard of “Professir X,” you can check out his website (http://www.myspace.com/professirx). He has been in a wheel chair for many years now (due to a spinal cord injury) and has traveled all over the world advocating for a cure to paralysis and educating others about SCI. Rich is a musician (rapper) and he uses the stage name “Professir X” for his performances and videos. As Professir X, Rich teaches others about paralysis through his songs, which send a positive, uplifting message of hope to his audience. Rich is also producing videos for I Believe TV as part of his many advocacy initiatives. I Believe TV is available to view online through the I Believe Inc. website and currently on local public access television stations (here in NJ). In addition to I Believe TV and Rich’s musical performances, I Believe Inc. is working on programs that will promote a variety of accessible events and provide resources and information to help improve the lives of people living with paralysis.
I Believe Incorporation’s philosophy is all about teamwork. I Believe Inc. has partnered up with similar non-profit organizations, to help one another unite and work together towards the goal of finding a cure to paralysis and improving quality of life. Just recently, I Believe Inc. received a “Quality of Life” grant from the Christopher & Dana Reeve Foundation and we are thrilled to be working alongside them. I Believe Inc. is also working with the National Spinal Cord Injury Association and helping to promote the “JustADollar” campaign (through the Rutgers University Foundation).
I’m so pleased to have been asked to be a part of I Believe Inc and hope you’ll join me, in helping to raise awareness about SCIs and paralysis. Visit us on the web at www.ibelieveinc.org. If you know someone living with paralysis (or you yourself are paralyzed), please share your thoughts with us. We’d love to help others promote their fundraising or events. After all, we are all working towards the same goal. Also, I’m asking all readers to please share our web site with others and provide feedback, ideas or questions.

Paralysis in America

According to an April 2009 survey conducted by the Christopher & Dana Reeve Foundation, there are 5.6 million Americans currently living with some form of paralysis. Paralysis is caused by various types of disease and injury, such as; Amyotrophic Lateral Sclerosis, Brachial plexus injury, Brain injury, Cerebral Palsy, Friedrich’s Ataxia,Guillain-Barre Syndrome, Multiple Sclerosis, Muscular Dystrophy, Spina Bifida, Spinal Cord Injury, Stroke, Syringomyelia/Tethered cord, Transverse Myelitis, Lou Gehrig's disease & Parkinson’s disease. This recent survey also indicated that 1.275 of people here in the USA were paralyzed due to spinal cord injury. An estimated 12,000 spinal cord injuries happen every year in our country. According to National Spinal Cord Injury Statistical Center 23% of all spinal cord injuries resulted in paraplegia, while 18% result in complete tetraplegia otherwise known as quadriplegia.
Although some people with less severe incomplete injuries may recover significant function beyond their injury level, less than 1% of all injuries resulting complete recovery. Spinal cord injuries can happen to anyone at anytime, in many ways. These injuries can be life threatening and in many cases life altering due to paralysis. A spinal cord injury can turn a person's life upside down in an instant. Imagine losing all your independence over night. Think about how different your life would be if you could no longer care for yourself.

There is hope for a cure, but research requires time & funding. Here in the United States, during the last decade or so, there unfortunately was not much support for finding a cure. President Bush’s veto on stem cell research significantly reduced public funding, which in turn slowed down progress in finding therapies to cure paralysis. During President Bush’s years in office our country spent less than $120 million a year on spinal cord injury research. In contrast, we spent $12 billion a year for care and support of people with spinal cord injuries (these figures do not account for the millions of other people receiving care and services related to other forms/causes of paralysis). Leading experts in the field believe that's an investment of less than $2 billion a year could provide a cure within the next decade. That is a small price to pay, especially given what a huge impact a cure would have on the lives of those people living with paralysis, not to mention the enormous savings it would produce over the long term.

Thanks to President Obama’s reversal of the veto on stem cell research and the recent passage of the Christopher and Dana Reeve Paralysis Act (S.1183) the future is looking brighter. The CDRPA “encourages collaborative research in paralysis, will hasten the discovery of treatments and potential cures and will improve the quality of life for millions of Americans living with paralysis.” This summer the world’s first human clinical trials will take place for stem cell therapies (GRNOPC1) for acute spinal cord injury patients (FDA gave approval to the Geron company in January 2009). It is critical that we thank our elected officials for the changes they’ve made so far. We must also encourage our leaders to continue to (and hopefully expand) support programs and organizations such as the CDC, which enable researchers to move forward in finding a cure.

Please help me and the millions of other people suffering with paralysis by supporting the search for a cure & educating others.

Visit my website for more info: myspace.com/sci_cure