Surgery or not?

Welcome back everyone,

Okay, so I know it's been a few days since I last posted. But this time I have a very good and reasonable excuse. (Chuckle). I have been recovering from surgery. If you are disabled, you most likely know the routine. Doctors come to you with a possible treatment or surgery in a effort to make you more independent or the least bit manageable. In my case, I've been lucky to have positive responses to many of those surgeries. Having cerebral palsy or any kind of chronic pain, you may already be familiar with the medicine baclofen. Baclofen is a muscle relaxant, which blocks the messages and makes relaxing easier. Taking this idea a step further, patients can opt for the baclofen pump. Although more intense, patients usually find the pump to have more of a impact. There are several steps patients may go through before finally deciding to install the baclofen pump.

First and most importantly is the baclofen trial. During the trial, patients endure a spinal tap. This allows doctors as well patients to see a greater impact when the drug is introduced directly into the spinal fluid. Measurements are taken in terms of how flexible or relaxed they are, in order to determine whether this would be a affective course of treatment. It is important to note that the oral doses of the drug are not always as effective as the intrathecal kind. That is because more of the drug can be blocked in order to protect the brain; whereas, less can be blocked when introduced through the spinal fluid. Individual results can vary, but after that, a decision is often made.

There are several other factors to keep in mind while determining whether the baclofen pump is for you. I will briefly go through some of them, but like I said, my blog is not the see all and end all of your resources. Do your own research.. You know your own body better than anyone.

Things to keep in mind..

1. There are side effects to every drug.

2. There are two different available pump sizes. In most cases, doctors prefer to use the larger size. This just means less time in Dr.'s offices. It is a plus for anyone.

3. This is a lifetime commitment. Although the positives outweigh the negatives in most cases, patients must realize what they are getting into. The pump has to be replaced at some point or another. In my case, it's every 10 years.

That's all for now. I would encourage you to do more research on the pump is this post has peaked your interest. Here are some places to start:

http://www.medtronic.com/physician/itb/index.html

http://www.neurosurg.wisc.edu/pedbaclf.html

http://www.spineuniverse.com/displayarticle.php/article228.html

http://www.medtronic.com/servlet/ContentServer?pagename=Medtronic/Website/ConditionStage&ConditionName=Severe+Spasticity&Stage=Management

A Note to All My Readers; plus my view on resilience

Hello everyone,

Okay, so I realize it's been FOREVER since I’ve posted on this blog. Let's just say I have been using the time for self-evaluation and improvement. God knows, I have only begun on this journey and continue to seek personal as well as emotional growth. I have a long way to go, but I'm getting there. In truth, there is only one thing that kept me from writing in this blog.. That one thing being fear. As I have tried to explain many times in past posts, the goal of this blog is to provide positive feedback and advice to those dealing what a disability. This not only includes people that live with disabilities themselves. But just about anyone, including the family members or friends of a disabled person. That being said, I felt it was my responsibility to uphold this positive spirit; Which up until recently, I didn't know whether I could do that.


To be honest, I'm not really sure if I should be writing this at all. But I figure that the best way to conquer my fear is to work through it. After all, nobody is perfect. Even though, I may be having difficulties in my personal life doesn't mean I can't take some of the advice I think important I've learned from other people and pass it on. That being said, I may stay away from the topics of a personal nature for a while. I ask just one thing of my readers during this time. Be patient with me as you have been. This transition from college life to the "real world" has been a very difficult one. More difficult than I ever imagined. Still, this summer I was blessed with many once in a lifetime opportunities, such as going on a cruise and going to Hawaii. Don't worry, the cruise and Hawaii may end up being topics for later posts.


Anyway, the topic for today's post is resiliency. This topic, or a version of it, has been on my mind for a while now. For obvious reasons. How do people cope with adversity? How does this adversity change people? For the better or for worse.. In a effort to answer the question, I will attempt to discuss the many different aspects of adversity. Take for example the motivational speech made by Amy Roloff to Central Michigan University on TLC's Little People, Big World. In it, Amy makes several good points.

They are:

• · Leaving the comfort of home to go to college. How was everyone going to act towards her having a disability? · What were they going to think about her being a little person?


• Her Initial reaction was different than Amy expected. It didn't matter.


• Amy said, "I perhaps made more of an issue [of my difference] than others really did."


• The thing about a difference is that you think you are the only person going through it. Sure, you can think as a limitation, but Amy suggests that you embrace the difference.


• Look at the positives.


• Learn to move on after disappointments


• · The Main Point: "yes, I'm different. But we're all different. Once we move past that, we have a lot more similarities than we do differences."
  · As humans, we focus too much on the appearance of people rather than the inside, the soul and heart of person. It's more important that we get to know people from the inside out first.


• "God doesn't make mistakes. I believe we are all here for a purpose and it's up to us to determine what that purpose is."-Amy
  

Seems like I am not the only one wondering how to deal with the trials and tribulations of life. The topic of the most recent disability blog Carnival: Resiliency. I spent most of the day reading the posts and found it very informative as well as inspirational. For that reason, I have included the link here:

http://jodireimer.blogspot.com/2007/09/disability-blog-carnival-22-resilience.html

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Citation for TV Program: "Amy's College Homecoming "TLC channel 70 at 11 am, 9/3/2007

On the job: what does that mean for people with disabilities

Hello everyone,


Okay, so I realize it's been a while since I've updated this blog with the latest disability news. Looking at my previous posts, it's been over three months since I posted regularly. Wow, that's a long time. I am just now starting to catch up on things in my life. A lot has changed for me during this time. As my regular readers have learned, I have been actively seeking a job for a while now. Thanks to my dad and his contacts at the local university, I am beginning to see a light at the end of the tunnel in terms of getting a job. By that I mean I actually have an interview! A real interview… it is set for July 13, soon after my family and I return from our usual Fourth of July vacation in Washington, DC. I am scheduled to meet with someone who deals with their hiring of general staff. There are no exact details on a position, but dad has given her a list of my abilities so she can have a chance to determine exactly where I may fit in at the University. Personally, my dad and I are both hoping that the position involves utilizing my skills as both a writer and researcher in order to help their professors. I have always had an interest in advocating for people with disabilities, so anything in the paralegal field would be great.


At this point, anything would be appreciated. I just need to get some experience under my belt of being out there in the real world. I still have a lot to learn; I look forward to experiencing both the joys and trials of having a job because I realize that it's just another part of life. In this respect, I realize I am not alone in my struggle to find a job. There are many people with different disabilities who are in a similar position. Take for example this October 2006 editorial by Ann Bauer entitled, "Willing, Able -- and Unemployable". In it, she tells this story of her 18-year-old autistic son struggling to find the perfect job. Despite his sensitive spirit and being "eerily responsible", his interview attempts remained unsuccessful. He encountered many barriers in the process of getting a job, such as a psychological test, which eliminates "people on the edge of the bell curve" at Target. She goes on to say that over the next decade 4 million people will be diagnosed with autism.


What does this mean for us as a society? Bauer answers this question by exploring the many options to her. She could sue, but for what? Bauer says , " Legal action wouldn't get Andrew, now nearly 19, working. What it would do is force him to defend himself and his abilities in court -- this young man who's still reluctant to speak at school." Wow, that gives people a lot to think about. In my opinion, the foundation of the issue still remains the same. Acceptance and understanding of a disability is vital to eliminating stereotype and bridging the gap between people. That being said, I would like to highlight some important steps public relations have taken as part of this process. For example, there is the Autism Speaks campaign. Check out the amazing "Autism Every Day" ads. They can be accessed at: http://www.autismspeaks.org/


For additional information on Autism , feel free to visit Autism Society of America at http://www.autism-society.org/site/PageServer

--

Citation:

Bauer , Ann. "Willing, Able-- and Unemployable ." Washington Post.com 30 October 1998 . 28 June 2007http://www.washingtonpost.com/wp-dyn/content/article/2006/10/29/AR2006102900544.html

Fun at the Park

Hello everyone,

Well, I hope everyone enjoyed their weekend. Mine was certainly on the unique side, considering I actually got to spend some one-on-one time with my father. For those of you familiar with our family or have gotten to know me and my family through the reading of these blogs, time is precious around here. Actually, it should be that way for everyone.. But still. So, dad and I headed out for a fun filled day at Cedar Point. The amusement park is conveniently located just about four hours from our house in Sandusky, Ohio. In general, Cedar Point is best known for its roller coasters and thrill rides. But being a disabled person such as I, it is obviously hard for some people to participate in those types of activities. That being said, I intend to highlight some of the disability-friendly tips as well as entertainment alternatives for fellow guests who are wheelchair-bound and unable to ride the rides.



First-time guests may want to visit the customer service office located in the Town Hall building. As well as fielding obvious questions about the park's rides, this office is also responsible for assessing each disabled person's ability to ride certain roller coasters based on their strengths and weaknesses. These lists are then compared to the ride's rules and regulations, coming up with your own list based on a person's personal needs; it also allows for special access for a personal assistant or guest to help you if need be. One of the most accessible rides is Paddle Boat ride. It takes guests on a river ride which towards the park; during the ride, they will enjoy interesting facts about Cedar Point and its history as well as the occasional corny joke.


Tired of their rides and roller coasters? Cedar Point has a variety of shows to satisfy guests of all ages. The most recent show, "Dazzle: Beyond Divine" incorporates both singing and dancing to create a fabulous act. Several songs included in the act are: "Dream Girls" from the popular motion picture, "It's Raining Men", "Diamonds Are A Girl's Best Friend "and so much more.

Another thing I noticed since the last time I visited Cedar point was increased accessibility to most outside stands. By that I mean there is a tray to the height of a regular guest on which a consumer can finish the transaction with the employee on duty; however, there is also one for wheelchairs.

For more information regarding accessibility issues or just general questions, please visit
Http://www.cedarpoint.com/public/park/rides/special_needs.cfm

Another reality check

Okay,

So I know it's been a while. Sure, I updated to let you guys know that I was still alive and kicking. But in retrospect, those posts did not help you if you came here looking for advice and support. For that, I am-well-I can't really explain it. All I can say is that it's been a long five months since I graduated. I have changed a lot. Those changes have not always been the best changes in the world. But well, we do not always control what happens to us. We can only control how we react and allow those changes to impact us influencing the choices we make on a daily basis! I am still trying to get a handle on that myself. I'm not doing very well at that either.

I'm not sure where to begin explaining myself. I guess it all begins with one word. Transition. According to dictionary.com, transition can be defined as a "movement, passage or change from one position, state, stage, subject, concept, etc.". Transitions have always been difficult for me. I'm one of those people who doesn't react kindly to change. Looking at my disability, you probably can understand why. I mean look at all it takes for me to live on a daily basis. I depend on people to get me up in the morning, feed me. The list goes on and on.

So, besides the obvious reasons. What makes this transition so different from all the others? Well, I have been trying to figure that out myself. I don't know how many of you are in this same situation or a similar one.. If you've been with me long enough, you've read about my experiences out in the real world, experiencing life in its purest form. Going to college and living on my home. In retrospect, it was just something I dreamed about. Something I hoped for. I mean, I knew it was possible. I had the brains and the intellect. I had proved that by graduating from a community college with a associate degree. Even graduating from high school.

But was it actually possible for me to experience the reality of going away to college and becoming an independent person, outside of being the daughter I knew I was as well as a person with a disability?

Yes, it was possible. They experiences I encountered as well as the people opened up a new world to me. They not only became part of my family, but showed me I can not only trust them. But I could trust myself. I was, in fact, able to make decisions as an adult. I was able to do things with my friends, without my parents always having to be there to assist me.

That being said, being back home is difficult for me now. Why? Because I've seen what is possible. I'm someone who can no longer be put in a box of limitations that society sometimes puts on me. It also makes things difficult when I look at that amazing progress many of my friends have made since graduating. For example, some of them have moved to St. Louis.

And yet, sometimes I feel like I'm in that box again.My job status is still nonexistent, which is probably a good thing for right now. Considering everything I'm going through. My independence has sort of gone down a bit, considering all I do is sit in front of my computer and talk to friends near and far. Don't get me wrong, I'm enjoying my time off, but after awhile you start wondering whether you will ever get out there and do some good for anyone. But I do have my moments. It's just really shocking how the time off can change things for the good or the worst. Since my independence has gone down, my spasticity has gone up a ton. I am left speechless and frustrated

This just goes with the territory of having a disability, I guess. Another part of having cerebral palsy is the need for surgeries. My dorm mates know that I take medicine in a special way to decrease my spasticity. Well, I recently found out that I have to have surgery to continue with this disability maintenance. This surgery has not been scheduled yet,

Why am I saying this. I don't know, but I guess what I want people to take from this is the power of transition. You will get where you need to be in time. The hard part of life is waiting

Upcoming road trip

Hello everyone,
Yes, I know it's been a long time-over a month since I last posted on here. Like everyone else, I was left speechless by the recent events that occurred at Virginia Tech. It's events like these that make you question everything you think, say or do on a daily basis. That's part of the reason why it has taken me so long to post. Birthdays have a tendency to do that as well and since I just had one it's caused me to reflect back on my life.

For me, this blog has always served two purposes. Yes, it is a place where I can open up and share my thoughts and feelings with the world. But more importantly, it should be a place where both sides of life should be adequately portrayed. After all, that is what a writer strives to do on a daily basis-tell a balanced story, despite the thoughts and feelings on the subject. What ever the subject may be. For the last month, that's why I haven't written. Because I haven't been able to tell both sides of my story. In fact, sometimes I feel like I'm still not ready to share everything that's been going on lately while looking for a career. On the other hand, I didn't want to leave you hanging wondering whether I was going to continue this little project or not. The truth is, I'm not sure anymore. I just wanted to let everybody know I'm doing alright. Thanks for sticking with me on the journey.

My family and I are headed on a little road trip, hopefully, this road trip will bring clarity and truth.

See you when I get back.
Debbie

Introduction to the television show, "Disabilities Today"; Other people like me

Okay,

Well, it's official.. it's been over three months since I first started writing in "A Life Without Limits: Rollin Into the Future." Honestly, it doesn't seem that long. But if you were to ask my dad, he would probably have a up-to-date word count on my blog.. That's what a proud father does I guess.

As I've stated many times before, most of my new and updated information come from a variety of sources. I will admit some of the comments from my own experiences as a disabled person and the knowledge I've gained from getting a communications degree. But a majority comes from outside sources, such as television, radio and other media. That being said, I would like to point out two local shows that are very helpful for people with disabilities. The first is called "Disabilities Today"; it's a show on PBS geared toward people with disabilities. It's theme--a show on abilities. The show, which airs in syndication, is hosted by Roger McCarville on every Tuesday at 5: 30. I have the link to the website already posted, so feel free to take a look.

Anyway, a few weeks back Roger interviewed another young man just trying to prove to the world that anything is possible if you believe in your dreams. As a young man, Brock had dreams of producing his own TV show. Nothing too big. But it turned out way bigger than he ever imagined. With the help of his brother, Brock started producing the show for a local TV station. Where did the idea come from? Brock credits God for their show and its inspiration. The point of the show being to inspire others to accomplish their dreams

Or as Brock puts it in his own words..

"I want to inspire people to do better and it doesn't matter if you have a disability. Do what you gotta do. Do what you gotta do ."

This show is called "J Rocks" and it features a variety of subjects. These subjects can be anything from how to deal with a disability to listening to comments of support Brock has received from various real-life celebrities. Such celebrities include: Regis Philbin, Sugar Ray Leonard, and Carrie Fisher (from Star Wars)

Unfortunately, because the interview was done on location, McCarville wasn't really clear about Brock's exact disability. He did state it several times, although it wasn't always clear because of the microphone feedback. Brock describes his disability as "basically I have to walk crooked my whole life and there's no cure for it." He is also impacted by the occasional shaking of his arms and legs.

What's Brock think of his disability? He answers McCarville with yet another amazing statement.

"But that doesn't stop me. Why should that stop me? No chance. I'm gonna keep going. I'm gonna just do what I do all the time because I know God is with me.."
His show can be seen on select local channels in Michigan (Grand Rapids, Bloomfield,) and New York. Just to name a few



Citation for TV Program: "Disabilities Today" Roger McCarville reporting, PBS channel 6 WTVS Detroit, at 5: 30 pm, March 20, 2007