A Big Step in a Positive Direction

(From Saturday, June 9, 2012) 


When you're dealing with Cerebral Palsy, you often have to deal with things that most do not. Things that may not be a big deal to some are huge deals for you. One of those things for me is t he ability to cross the street, which I lost a few years ago after nearly being hit by a car when I had the right away. 

For the first time in five years, I was able to cross the street that has been plaguing me, by myself, without my friends holding my hand. I had to use the walker, but I guess that's okay. I tend to think of the walker as a smaller version of a power chair. You see those all the time with people getting across the street. The walker's just a bit more primitive. 

So I've gotten used to the fact that this is h ow i cross the street. I look forward ot a time where I learn the bus schedule. ^^ That is my next step in independence.

The Proof is In Practice

There is a lot to tell you guys. The first thing is that I had my first Occupational Therapy session yesterday. I've been put on a strict typing schedule where I must take breaks. This supposedly to alleviate the symptoms of carpal tunnel syndrome. I tried it last night, and you know what?  It actually did work! Amazing, right? 

The second thing I needed to say is that I had a major therapy breakthrough with Emily! Emily has been having me work on my balance by practicing on these domes that are upside down so that they tilt. I will try and get you guys a picture tomorrow when I go into therapy. Anyway, I managed to get across them not once, but twice, barely holding on to anything. 

These two things are just the tip of the iceberg for me. Later when I got home, Mom remarked that she noticed a marked difference in my walking around the house. That means t hat whatever is going on in Therapy, it's working. 

However, that landmark at therapy was hard to take yesterday without my mom being there to witness it herself. I know it sounds crazy, but my mother has been there for me for 31 years, and we have gone through hell and back together between all our difficulties.  And it would have been nice to have her there in therapy with me just yesterday. It figures the one time I have this kind of breakthrough, she had to be at an appointment. That's life, though. She does have to take care of herself, too. She's no good to me if she's not healthy, and vice versa, if you know what I mean. 

So the next few weeks of practice and therapy, and exercise are going to be crucial. This could very well be my last four week session with Physical Therapy. And as sad as I am about it, I'm also happy. This means that I have no more need for it, and it has served it's purpose. I have made great improvements, and have adjusted my lifestyle to suit my new situation, so everything I have hoped to accomplish in therapy so far has come to fruition. Now, it's time to put things into action. 

I want to thank everyone who have continually read this blog. Even if you've never left a comment, or talked to me about it in person, it still means the world to know that I am somehow helping someone else cope. 

Heather

Another Small Acheivement!

Today, I did something I thought would be impossible for me without one of those Renew bands that are selling all over the place. I balanced on a wobbling board. That's right. I actually kept my balance for 42 seconds on a surface that tilted.

Still can't do one foot, or walk backwards without feeling awkward. But let's not focus on that! Today has inspired me to inspire you. When you're going through physical therapy, it's unrealistic to believe you will magically wake up and be able to do everything you used to do the same way you used to do it. It sometimes takes time, or adaptations before you can get your independence back.

Each of us dealing with our difabilities have to remember that they come with different challenges. Learning how to get past your individual challenges is what's important. Never ever consider the fact that someone else is progressing through therapy faster than you. Sometimes, that's how it is. We all have to adopt different behaviors to fix what's not right for us.

I don't want to say "normal". Normal is also a word that is thrown around far to often. We're normal. We're a different normal. What's normal for us may seem strange to others, and vice versa.

Okay, now that I've digressed far enough let me get back to my point. My point is that every small acheivement is only a building block of your whole overall goal. That doesn't mean you shouldn't celebrate it, though! When you reach a goal such as being able to balance or figure out how best to manuver with a cane on your own, find a small way to reward that. Although, for me? Being able to balance was good enough of a reward,

Pets and Individuals with Difabilities

There are many things that happen when you start dealing with ongoing symptoms of your Cerebral Palsy. Some of them are good, if you have a team to work with. Some of them aren't so good.

One thing that does happen is giving up pets. My hedgehog Sonadow was adopted today by a very loving couple. That was very hard for me. But I had to get him to a family that could physically keep up with him and his cage.

It's hard, when you have to lose a pet, and no one knows that better than I do. I've lost countless pets to death, or having to give them up to move. This has recently prompted me to start looking into ways to take care of Murphy when it comes time to move to Florida.

Research has given rise to what Murphy really is for me. He is an Emotional Support Animal. ESAs are animals that add stress relief, activity (such as cleaning of litter box and making sure food and water are given), and to ease lonliness. Murphy does all of these things, and one thing more. Being unable to have children, he is as close to a child as I'm going to get.

Now I have to get my doctor to write a letter, stating that Murphy is an ESA, and must be allowed to inhabit a no pet zone. Keep in mind that not all cats can be registered as such. In other words, you can't just say, "Oh, I need him with me, because he keeps me comapny". In Murphy's case, I have noticed that I tend to scratch and pick less when he's around. This one cat has done more for me than I think any psychiatrist has done.

I never thought that of him, really, until I started thinking about it. And I love him so much. He's a good cat and best friend, and there are not enough words to describe how he has helped me deal with everything in my life both past and present.

A Few Slow Days

Hey folks. Sorry about missing a couple of days. I've been in so much pain that I couldn't focus on anything. Yesterday's physical therapy was torture, honestly. We had my re-evalution. I have improved in just a month.

Why do i mention this? Because I want everyone with some type of nueromusclar disease to see that physical therapy can really help. It doesn't happen over night, and even my improvement was small, but remember that you need to celebrate the smallest acheivements. These are just as important as the larger ones.

I've been struggling with my depression, and mood swings. I'm not sure if it's medication, or not. I have plans to talk to my doctor as soon as I can. But right now, I am dealing with so many other appointments, I can only handle one health issue at a time. This especially true because my mom is having to re-arrange her schedule all the time. And it's not fair to her. So I have decided to wait on that a little.

Please understand that I am feeling accomplished, but I am also feeling like the results I am getting are too slow. This is unacceptable to me psychologically. I am used to doing for myself, nd right now, I still can't do everything i would normally do. This is ordeal is definitely a test of my patience. And so far? It's not working well. Thank goodness I get to see Emily twice a week. This woman is fun to be with, and she helps me out.

I guess the moral of this entry is that you can learn to be patient, and that will help in the long run.

Independence is Keys

Independence has always been key for me. From a very early age,my mother stressed how important it was to be independent. She wanted me to live as independently as I could. when I was little being independent was not always easy. However, I was also stubborn.

At the age of seven, I underwent hip repair to fix the way my legs were turning in. That operation left me in a body cast for six weeks. Just like every other seven-year-old, I hated being immobile and unable to do anything. So, I found ways to cope with it. c

Today, I am the exact same way. When I found out my Cerebral Palsy was getting worse, I was devestated. But only for a little while. I have never been one to settle on something I wasn't happy with. I sought the help of a new neurologist, and have gone back to physical therapy. This is only my first week, and it has been really brutal.

I won't lie and say that I don't cry when things get hard. But tears are shed for more than one reason, too. When I was finally able to cross a street by myself a few Weeks ago, that was a small victory towards independence. And when I can lift my leg a little higher each therapy session that is another. So, I try to focus on small victories, instead of all the things I have been forced to quit doing.

How do you deal with new, limitations? Do you just give in, or fight to regain your independence?

Introduction Part 2

From the time I was able to walk, Mom knew that something wasn't right. Even though I was walking, my legs were knocking together, in other words, my legs were turning inward. This caused me to be unstable in my movement.

Mom enrolled me into early preschool at Brockman Elementary School for the Disabled. That is where I began to develop my early social life, along with confidence in walking. I met teachers and Physical Therapists that would follow me for the remainder of my elementary school career.

Two of the most important people in my therapy were Ms. Susan and Ms. Barbara Wahl. The two of them were instrumental in my early muscular development. Brockman was also where I learned how to read a little bit.

Brockman provided Mom a support group, too. She became and advocate for disabled families on Fort Jackson, which didn't have a program like that. With help from Brockman, Mom founded a program called ACS with Mrs. Cheryl Jackson. She also founded the first Girl Scout troop for disabled girls. It was a lot of fun. The crafts we did were designed to help us with our various degrees of occupational therapy.

I stayed with Brockman until I was four. I was transferred to another type of school. This school was known as Easter Seals. What Mom and I didn't know was that this is where my true independence would begin.

And here, I will stop with the history. From here on, I will be sharing my current experiences. I hope you will continue to join me for this journey.

Introduction Part 1

Hello. You have reached the blog of Heather Kantz. I am a 31 year old woman with Spastic Cerebral Palsy, and I am here to share my experiences dealing with my disability as I am getting older.

First let me make it clear that from this point on that cerebral palsy, no matter what form you are going through, is not going to be referred to as a Disability. It will be known as a "difability". I came up with this word today, because I was feeling a little down about myself, and the recent developments in regards to my mobility, and independence. There are a few factors that have also contributed to my current state.

When I was born, I was born three months early. My mom was really sick, and my father was absent. At birth, I weighed less than 2lbs, and was diagnosed with Hydrocephalus. I was the first baby to have a VP shunt put into my head to save my life.

However, the complications didn't stop there. They discovered that my tiny heart had small holes them. They had to give me open heart surgery before I was even a year old. I spent the first year of my life in a hospital in Denver, Colorado. Of course, my mom was by my side the whole time.

I can't imagine what my mother thought when she realized that her first born wasn't developing like a normal baby should have been. At a year and half old, the doctors diagnosed me with Spastic Cerebral palsy, and told my mother that if I lived, it wouldn't be past the age of five, and I would never walk.

Being a baby, and too young to remember, I don't know how Mom coped with this news. I remember one time she told me that she hated God for doing this to her. For giving her a child to take care of that was going to need care for the rest of her life. And I promise you, this is a woman, for as long as I've known her, has been a strong Christian woman, so hearing that part made me really think, you know?

My mother went about taking care of me, oxygen tank, seizures and all. For the most part, I was a normal baby. I didn't like having my diaper changed, I didn't like the oxygen. (I used to pull it off!) . But she says I was a happy baby, and rarely into trouble for doing anything normal babies do.

I guess around the time before I turned 2, Mom started taking me to special therapists that worked with children that had various neuromuscular disorders. This included orthopedics. I had one therapist that stood out. I don't remember his name, but I remember, vaguely, what he did for me. You see, I was so small that a lot of the walkers they wanted me to use were too light. So he went home, and built a stroller for me to use out of wood, and I would push my Kermit the Frog in it. Easter Sunday, 1983 at the age of 2 years old, I walked to my mother for the first time.

To Be Continued.....