BREAKING MY OWN RULE
I'm not one who has really been a fan of blogging or bloggers in general. However, I do think that such a tool is beneficial when it can help others by sharing experiences and advice that is not easily found elsewhere. Such is the rationale that has prompted me to begin this blog.
FOR THE FORGOTTEN
FOR THE FORGOTTEN
There are about 550,000 persons in the US with cerebral palsy; the number of new cases per year has increased 25 percent during the past decade; now there are about 9,750 new cases each year, according to UCP. Approximately 70 percent of cerebral palsy occurs before birth, about 20 percent during birth, and most of the rest within the first two years of life.
What is most surprising is that 80% of the CP population in the U.S. is over the age of 21! Although the picture that usually leaps to mind when one thinks of cerebral palsy is a child in a wheelchair or braces, the large number of adult cerebral palsy patients underscores the need for continuing cerebral palsy management throughout adulthood, with all its myriads of challenges to be met for quality of life. What happens to those adorable poster children with cerebral palsy? They don't fade away. They grow up, they grow old; and they continue to have cerebral palsy and face its changing challenges every day of their lives. (Don't worry, we're still adorable!) (http://www.oandp.com/articles/2005-09_02.asp)
This blog is primarily written for people who wish to learn more about the condition and its longer-term effects on the adult patient as well as those who suffer with adult CP and are curious as to the specifics of the Selective Dorsal Rhizotomy surgery which has been refined by Dr. T.S. Park at the Children's Hospital in St. Louis, MO.
This surgery is one that I have decided to have in three weeks time. It is one that I spent the last year researching and physically preparing for. It is what I hope will mark a "new beginning" for myself. More importantly, I hope to keep this blog current as the events unfold. In keeping such an accurate log of information, I hope to preserve the true feelings, developments, milestones, setbacks, and any psychological impacts I may experience along the way.
It is my hope that this description will be of help to my fellow adult CP patients out there who are considering this procedure. I know for me, this procedure was stumbled upon luckily as I did an Internet search. It is sad that such a breakthrough of this kind is not better communicated in the medical community. Unfortunately, this goes to illustrate the lack of focus and priority the adult CP population is receiving in this day and age. We truly are a forgotten group, we are the CP kids from yesterday all grown up.
CP is given much attention by the medical community in the early childhood years. Obviously, it is in these years that the most improvements can be made to reduce long-term effects of CP. However, due to its pediatric focus, most patients do not have a medical expert to oversee their progressions, regressions, and changing needs as they age into adulthood. Most of us have been given a physical therapy regimen to follow daily (although I have yet to meet any that truly follow it consistently) and sent on our way to maintain a body that is only going to worsen over time due to aging, strain on joints, and poor postural habits due to muscular and skeletal compensations to keep our heads on straight!. Most also have had some corrective orthopedic surgery in their youth, however, these surgeries only provide a postural "quick fix", that most likely will not last the long-term. Dr. Park is the first surgeon in the U.S. (perhaps the world) to attack CP at it's core "trouble-maker", muscle spasticity.
Although this procedure has only been performed on around 50 adults to date, I was lucky enough to find two patients locally who happened to be in the "Lucky 50". I want to thank Marty from W. Seneca, NY and Brad from Columbus, Ohio for their support and help in my search for answers in this process. I only hope we continue to grow this chain of support for the many future adult CP patients in the "SDR Club". I also want to thank the best Physical Therapy team in the Ken-Ton area. Dorothy, Andy, Jane, Erin, Dave, Jim, Alicia, Silbie, Sue, Heather, Amy, Joan, Bonnie, Sam, and Rachel. I think they are almost as excited as I am and I know that in the long-run, their efforts in my rehabilitation will be unmatched!
A final note: I have titled this Blog "My Selective Dorsal Rhizotomy Journey" for two reasons. One, it is my hope that the title triggers Internet search results quickly for those potential surgical candidates of the future. I apologize for not having something cute and fancy! Second, in keeping with my favorite TV show, "SCRUBS", all posts will be titled, "MY......." as was the case of each episode of the hysterical program.
My next entry will give an explanation of the causes, symptoms, and roadblocks of CP and why the SDR surgery by Dr. Park is the only one of its kind offered to the young adult patient of 21-39 years of age.
What is most surprising is that 80% of the CP population in the U.S. is over the age of 21! Although the picture that usually leaps to mind when one thinks of cerebral palsy is a child in a wheelchair or braces, the large number of adult cerebral palsy patients underscores the need for continuing cerebral palsy management throughout adulthood, with all its myriads of challenges to be met for quality of life. What happens to those adorable poster children with cerebral palsy? They don't fade away. They grow up, they grow old; and they continue to have cerebral palsy and face its changing challenges every day of their lives. (Don't worry, we're still adorable!) (http://www.oandp.com/articles/2005-09_02.asp)
This blog is primarily written for people who wish to learn more about the condition and its longer-term effects on the adult patient as well as those who suffer with adult CP and are curious as to the specifics of the Selective Dorsal Rhizotomy surgery which has been refined by Dr. T.S. Park at the Children's Hospital in St. Louis, MO.
This surgery is one that I have decided to have in three weeks time. It is one that I spent the last year researching and physically preparing for. It is what I hope will mark a "new beginning" for myself. More importantly, I hope to keep this blog current as the events unfold. In keeping such an accurate log of information, I hope to preserve the true feelings, developments, milestones, setbacks, and any psychological impacts I may experience along the way.
It is my hope that this description will be of help to my fellow adult CP patients out there who are considering this procedure. I know for me, this procedure was stumbled upon luckily as I did an Internet search. It is sad that such a breakthrough of this kind is not better communicated in the medical community. Unfortunately, this goes to illustrate the lack of focus and priority the adult CP population is receiving in this day and age. We truly are a forgotten group, we are the CP kids from yesterday all grown up.
CP is given much attention by the medical community in the early childhood years. Obviously, it is in these years that the most improvements can be made to reduce long-term effects of CP. However, due to its pediatric focus, most patients do not have a medical expert to oversee their progressions, regressions, and changing needs as they age into adulthood. Most of us have been given a physical therapy regimen to follow daily (although I have yet to meet any that truly follow it consistently) and sent on our way to maintain a body that is only going to worsen over time due to aging, strain on joints, and poor postural habits due to muscular and skeletal compensations to keep our heads on straight!. Most also have had some corrective orthopedic surgery in their youth, however, these surgeries only provide a postural "quick fix", that most likely will not last the long-term. Dr. Park is the first surgeon in the U.S. (perhaps the world) to attack CP at it's core "trouble-maker", muscle spasticity.
Although this procedure has only been performed on around 50 adults to date, I was lucky enough to find two patients locally who happened to be in the "Lucky 50". I want to thank Marty from W. Seneca, NY and Brad from Columbus, Ohio for their support and help in my search for answers in this process. I only hope we continue to grow this chain of support for the many future adult CP patients in the "SDR Club". I also want to thank the best Physical Therapy team in the Ken-Ton area. Dorothy, Andy, Jane, Erin, Dave, Jim, Alicia, Silbie, Sue, Heather, Amy, Joan, Bonnie, Sam, and Rachel. I think they are almost as excited as I am and I know that in the long-run, their efforts in my rehabilitation will be unmatched!
A final note: I have titled this Blog "My Selective Dorsal Rhizotomy Journey" for two reasons. One, it is my hope that the title triggers Internet search results quickly for those potential surgical candidates of the future. I apologize for not having something cute and fancy! Second, in keeping with my favorite TV show, "SCRUBS", all posts will be titled, "MY......." as was the case of each episode of the hysterical program.
My next entry will give an explanation of the causes, symptoms, and roadblocks of CP and why the SDR surgery by Dr. Park is the only one of its kind offered to the young adult patient of 21-39 years of age.
2 comments:
This blog is a great idea (dare I say inspired?) to help other people who are in a similar situation as yours. You've already done all the legwork for them! And for those of us who love you, it gives us a way to be informed about your upcoming surgery and "summer of recovery." God bless you!
Your Ken-Ton Rehab Team is ready for the next leg of your journey. Keeping us informed is a great learning tool for the team of professionals working for you, Ken. Sort of humanizes healthcare- isn't that unique!!
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