Showing posts with label stem cells. Show all posts
Showing posts with label stem cells. Show all posts

Tuesday, September 7, 2010

What About Research?

Someone asked me if I've been to the Rutger's Keck Center, here in NJ, in response to my recent blogs. The Keck Center is dedicated to finding a cure to paralysis. Dr. Wise Young is the Founding Director, and holds open house sessions, where he gives updates on their latest research. Dr. Young also pioneered a SCI research program in China, due in part, to all of the restrictions and set-backs in the field, here in the USA. I've been following his work since my accident.

Here is what I wrote, in response to the suggestion to attend Dr. Young's lectures:

I haven't been to the Keck center. I live in Freehold, which is not far from Rutgers, and would really like to go. Every time I've considered it, it somehow falls through. I try to keep up to date with "cure" info through the Care Cure forums & other websites, like the CDRF. I have a lot of respect & gratitude for Dr. Young and other researchers in the field. I'm just at the point where I can't see any practical implications for myself. I'm sure people will not have to suffer from paralysis, some day, and that's certainly worth fighting for. I just don't think that there's much probability that, that "someday" will be anytime soon.

I've always been a planner. I thrived on organization and time management, and owe a lot of success to those skills. In college, I wrote papers weeks before they were due. As a teacher, I would plan out my entire sequence of lessons, for the year, for each grade level (I taught art, grades1-5), in August. In fact, the Friday before my accident, I had been working on lesson plans for an "art night" exhibit that I was planning for what would have been the following year. I still have file folders in my file cabinets, marked "2005, 2006, & 2007" with projected budgets and vacation plans. It's my planning that kept me focus and gave me the peace of mind in always knowing (or so I thought) what was around the next corner. Having control (or the illusion of control) reduced my stress, because I always felt prepared. Unfortunately, it's those rigid, perfectionist type qualities in me, that make is so hard for me to deal with my accident. I went from being a borderline "control freak", to having almost no control over my life, whatsoever. Learning to "go with the flow" has been a tremendous struggle for me. My accident shattered the illusion of control, I thought I had, and opened my eyes to the reality, that all the preparation, planning and effort in the world meant nothing, at the end of the day. Most people can't even begin to grasp the reality of how fragile their lives are, because it such a scary thought. It forces us all to realize how powerless we are, to so many aspects of life.

Not knowing, when, or if I'll ever be cured, is terrifying. The prospect of living like this for decades is unacceptable, to me. It's funny (well, to me, and my warped sense of humor) but, I can remember setting a sort of "time line" for myself, during my stay in Kessler. Ten years, has been the limit, in my mind, since that day. I thought, "I'll try my best to be strong & give myself ten years, to be patient and see what science will bring. If they do find a cure, I'll still be young enough to fulfill my dreams, and if not, I'll have given enough to feel satisfied with my effort." As morbid, or crazy as that time line might seem, it has served as a light at the end of the tunnel for me, and given me something somewhat tangible to deal with. I guess, it's been my way of giving myself the illusion of control over my life, even though, deep down I know anything could happen. Having a limit, gives me a tiny bit of comfort. Although I don't have a specific game plan, for what will happen when I hit that ten year marker, it's just my attempt at creating a goal, that I can focus on. Here I am, at the halfway point, of my illusionarytime line, and I don't feel as though researchers are realistically any closer to curing me, than when I was injured. It makes me feel like there's a very bleak future awaiting me. Without a cure, that means I'm stuck living with what I have now. What I have right now, doesn't seem nearly enough, to want to keep struggling, for any huge length of time. Even the thought of five more years, seems near impossible to me, at the moment. Yet, if I knew 100% that, let's say, on June 1, 2018, at 3:00pm, I'd be up and moving, and caring for myself again, I know I'd have the strength to hang in there. Even the worst criminals get a definitive sentence, and know what to expect of their fate. Right now, as far as I know, I've been given a life sentence. My sentence could potentially be shorter, but no one can give me concrete answers, and the current conditions are horrible.

I realize, I'm looking for answers that no one can give. I know that no advice will solve my dilemma. I don't really know what it is I'm seeking, in terms of help. Honestly, I just want some one to save me, and make this all go away, or for me to wake up, and still have it be the morning of June 4th, 2005. I know that's not going to happen, but I guess, I also want the average person to hear my pain, and stand up and fight for me, and everyone else with paralysis. I want people to open their eyes, and change their priorities (by putting finding cures and alleviating suffering at the top of their lists).



Related links:

1. Keck Center- http://keck.rutgers.edu/center/center.html

2. Just A Dollar Campaign- http://www.adollarplease.org/

Wednesday, June 9, 2010

Acceptance

I often read posts from the Care Cure & Christopher and Dana Reeve Foundation forums. Both websites are dedicated to spinal cord injury and paralysis awareness and research towards finding a cure. Both websites also have active online communities of people living with paralysis, caregivers and medical & mental health professionals. It's helpful to be able to read how other people deal with paralysis and know that there are other people that can understand your situation. I contribute my opinion, information and advice from time to time. I'd encourage anyone effected by paralysis to check out both websites.

The other day a person with a C6-C7 injury posted a question that caught my attention. This person was injured nine months ago, and wanted to know how other people cope with their injuries. Specifically, he asked, "those of you that are years out, when did you (if you did) come to terms with your new self? How long did it take for the emotional pain to subside?"

I didn't really ask myself this question until much later in my "recovery." I think I was in complete denial that I wouldn't "get better" for at least a year after my accident. Even now, a part of me wants to reject my "new self." Acknowledging this is it, means admitting that I won't ever get better. That is a hard pill to swallow. My way of "coming to terms" with reality is to essentially grieve for myself. I grieve over the loss of the "old Christina" and try to make the best out of the "Christina" that was left behind. That might sound bizarre to some people, but when every aspect of your life is turned completely upside down, you can't help but feel a sharp divide. One day you're independent, the next day you're dependent. The easiest way for me to deal with my life now, is to not constantly harbor on the past. That life is gone.

I decided to respond to the question about acceptance, because it is something I'm still struggling over today. I'm not so sure I want to accept this life. Here is what I wrote:

I think "acceptance" might not mean the same thing to everyone. When I think of that word, I always think of validation and surrender. On one hand, I acknowledge the fact that my life has changed (C5 complete, 6/5/05) and I recognize that the chances of me ever being "cured" are slim, to none. On the other hand, I will never be satisfied with this life and will fight to change as much as I can. A lot of people use the word acceptance to express being at peace with their situation or the fact that they have given up hope for anything better.

I'm a realist, so I know I'll probably spend the rest of my life in a chair. However, I feel like the moment I accept that this is it, that I'd be giving up hope. Without hope, I'd have no reason to try to keep moving forward. We've been dealt a really crap luck hand of cards and no matter how you look at it, it's always going to be crap, unless something changes. We can choose to do what we can to improve the situation we've been handed and make the best of it, or we can just accept it for what it is and leave it at that. If you accept someone, or something, you are essentially saying, "you/it are/is fine the way it are/is." Some people have learned how to accept their injuries and still move forward (reality is, life moves forward with, or without you) and are content. I will never be content living with paralysis.
It's horrible, what we go through and how we have to live. I wouldn't wish paralysis on anyone. Every adult human being should have the basic freedom of being able to care for themselves and privacy, for modesty. Paralysis steals both of those basic human rights, in addition to the pain & suffering due to all the other aspects of life that change or are lost altogether (physical talents, careers, material possessions, dreams, intimacy, life without medication, relationships, etc.).

No one should have to endure all of the loss and suffering that paralysis can cause. I can understand and accept losing abilities or senses gradually, with age. There are a lot of elderly people that require assistance, but the difference is that they were fortunate enough to live full, "normal" lives. If I were eighty or ninety years old, I'd be able to accept needing help. It's natural to lose or experience a decline in abilities, strengths and senses as part of aging, and getting older. Paralysis is so awful because it steals all that and more, in the matter of seconds. People that suffer a spinal cord injury aren't given a lifetime to deal with gradual change. Paralysis forces you to cope with a lifetime's worth of loss (not even, because there are tons of relatively healthy people in the eighties and up) overnight and robs you of the future you planned.

Another one of the worst aspects of spinal cord injuries is that they are completely random. There are no genetic markers, family history or warning symptoms to an injury. Anyone can get injured at any time and the results/recovery are often just as unpredictable a the injury itself. There is no full proof way to avoid injury and everybody's spinal cord injury is entirely unique to their physiology and the exact way they are injured. In fact, I'm always reminded of this man Gene, that was in rehab with me, at Kessler. Gene had been a fire fighter in NYC. One night, he and five other fire fighters were forced to jump out of a five story building (or be burnt to death). Two of those men died at the scene, while four survived. Obviously, Gene was among the four survivors. He was the last of his group to leave rehab after having survived the fifty foot plus fall, a coma and about eight months of therapy. On his last day of therapy, Gene walked out of Kessler with a cane.I can remember watching him leave, in disbelief. I recall feeling happy for him and jealous of him at the same time. It made no sense to me, how a man could walk after falling five stories and yet, doctors were telling me it was impossible for me to do the same. Contrarily to Gene, I broke my neck in a failed attempt to shallow dive in a swimming pool. I dove from about five and a half feet off the ground. I only spent three months at Kessler and left in a head controlled wheelchair. There is no rhyme or reason when it comes to spinal cord injuries. That is why I feel it is so important to teach people about paralysis. People need to understand how difficult it is to live with paralysis and recognize the fact that they can be injured just as easily, and unpredictably as we were.

It's insanely frustrating that doctors (the scientific community as a whole) still have little to offer in terms of a cure or recovery. It makes me angry and sad to know that right now, someone could be getting injured and doctors won't be able to help that person, any more than they helped me five years ago. It's sometimes baffling to me how far humanity has come and yet, we still have failed to figure out all there is to know about our own bodies. You can't help but want to lash out, at times, over how absurd it all seems and how messed up our priorities seem to be. Scientists say a cure is possible. Since I've been injured, I've heard and read the magic time span of five to ten years, over and over again. Unfortunately, people with injuries decades older than mine have been hearing, hoping and waiting for the same results, for much longer. It makes me sick when I hear researchers say it's just a matter of funding and policies (keep in mind, every country has it's own set of priorities and regulations).The thought that I could be cured (or that I might have never had to endure all that I have the past five years) if it weren't for lack of money and support, makes me want to scream.

At times, I get so fed up and just wish there was someone to give me answers. It all seems so unfair and hard to understand why more isn't being done. Research towards understanding and repairing the central nervous system is promising and on-going, but moving at a snail's pace. Our spinal cord and brains are the most important parts of our body (also extremely complex) and unlocking the keys to repairing damage, would have huge practical applications and alleviate tremendous suffering (even save on spending, in the long run). So why is it that we spend more money on detrimental things, like war and oil? How can our government thinks it's ok to invest billions of dollars to search for microbes in space, while he have millions of people suffering here on Earth? Many of the world's brightest minds are focused on questions of curiosity, versus questions of necessity. While fascinating, I fail to see what practical information that (most of) our space program can hope to provide. It seems like common sense, that humanity would want to understand all there is to know about ourselves, before wasting brainpower and time on other topics.

Sometimes I wonder if our society is the way it is, due to ignorance. Logic tells me that our priorities as a country, stem mostly from greed and selfishness. I think the rest of society just doesn't think about something, unless it effects them personally, or it's constantly in their face. So often I feel like people need to be hit over the head, before they'll pay attention. The majority of people are so self absorbed that it's hard for them to see the bigger picture. I always joke that its as if I see the world through a pair of one hundred year old eyes. Before my accident, I was guilty of being caught up in material things and had a totally different perspective on life. I stressed over stupid, insignificant things and didn't realize how blessed I was. I'd like to think of myself as a kind, helpful person, but before my accident, there was a lot of wonderful things I took for granted. In general, people need to be reminded and need some kind of emotional connection to really care about and support a cause. The out pour of aide and money that went to Haiti the first few weeks after their horrific earthquake is one example, of the potential support people are willing to give, if it touches their heart.

Right now, the support for paralysis research is not enough, especially when you look at diseases like AIDS and Cancer, and compare the amount of support that is generated for those illnesses. I think it's our job (for our own sake as well as others) to be out there, reminding people and/or teaching people about paralysis. It shouldn't have to take a celebrity to raise awareness. Part of the problem is that not enough people are exposed to disabilities, know someone with a severe disability or realize how quickly their life can change. I believe if more people really understood what paralysis is like, that there would be more support towards finding a cure. Naturally, a cure to paralysis would mean wiping out a ton of diseases and disabilities(ALS, MS, MD, Parkinson's, CP, etc.), and would effect millions more than just people with spinal cord injuries.

I can't imagine that my sadness, anger or frustration will ever really go away. I've just learned to channel my feelings into something productive (when I can) and try to find purpose in it all. I also think it's perfectly normal to have up and down days. I'm sure if you think back to your old life, you had your share of bad days too. I often feel like I've been given an impossible task. Although people try their best to be supportive, unless they've lived with paralysis, it's near impossible for them to truly understand. Other people will offer you a ton of advice and try to cheer you up. People mean well, but only you know yourself best. You have to find your own reasons for wanting to keep moving forward. I've gotten better at dealing with certain things over time, but find it hard to believe I'll ever be satisfied or happy in my situation. Don't get me wrong, I still have things to be grateful for and things that make me happy, but it's always bittersweet.

I just take it one day at a time & try to give myself purpose. My family and friends are one reason I try to keep going forward. My hope for a cure is my second reason and my desire to salvage something positive from my accident is my third reason. For right now, those three reasons are enough. If my SCI has taught me anything, it's how fragile life is and how little control we ultimately have over our lives. I still struggle with the past, although I know I can't change it; I miss it. I try not to think ahead too far into the future, because I know how quickly things can change. I set loose goals for myself and take things as they come, day by day. Tomorrow my reasons to keep going might not be enough, or I might find even more. Who knows? Just do your best; that's all you can expect from yourself.

Right now, your quality of life rests heavily on your own choices. You have more power to improve your state of mind and/or your situation than anyone else. I have a website, dedicated to SCI & paralysis awareness. It's not a big deal, or anything, it's just one of my attempts at reaching out to others. It makes me feel good, to do things to raise awareness, even if it's small. It's important to me to feel like I'm doing something productive and that I'm contributing towards a cure. If you're interested, check it out. I hope my advice helps a little.

Sent from my iPad

- Posted using BlogPress from my iPhone

Friday, September 25, 2009

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