Living with CP: the teen years part 2.

Hello everyone.  In today's entry I'm going to talk about how it was to bring a newborn baby home and all of the adjustments that had to be made in the family.  Let's get going.

From the very first day we brought Nicholas home from the hospital, we could see we were probably going to have some difficult times with the family dog.  When we came home, we sat Nicholas down on the couch in his car seat and the dog jumped up on the couch and was basically standing over top of Nicholas.  He did not do anything harmful, just smell him.  The dog was not a large one.  He was a Cockapoo.

We also must remember the handicapped son in the home, as well.  As you might guess, it was somewhat hard for me to get used to all the changes that were going on.  For the first 11 years of my life I had all the attention.  Now, I had to share it with Nicholas. 

My father is one of those individuals that likes to work very late at night.  It was not unusual for him to work until 10 or 11 o'clock.  That meant that my mother would have to take care of both of us and the dog all day long.

We thought as time went on that the dog would get better but unfortunately it got worse.  He started to tear up the carpet in the house.  One day my father put him on a chain in the hallway while we went away and that floor was linoleum.   When we returned home, he had damaged that floor.  We all knew something had to be done before he damaged the whole house. 

In my next entry see what happens next.  Have a great day everyone. 

Living with CP: the teen years part 1.

I hope you all are having a great day. Before I talk about my last year at Meadowdale High School, I'm going to tell you all about when I was no longer an “only child”.  Let's get started.

My first 11 years of my life it was nice and peaceful in the house. It was just me, my mother and my father.  They attempted to have other children but my mother had a miscarriage and another unfortunate pregnancy where the umbilical cord got wrapped around the baby's neck at birth.  Since he was full-term, he was named David.  When my mother found out she was going to try for lucky number 3, everyone knew that it was going to be a long 9 months.

Sure enough, when she went to the doctor he told her that he wanted her on complete bed rest the whole time.  They also gave her a monitor to bring home and wear around her belly 24-hours a day so that they could monitor the baby's heartbeat from the hospital.

It was so hard for my mother to lay around for 9 months and not do nothing and have everyone else do everything for her. She liked to get up and go and do everything on her own.  That being said, the 9 months came and went with no problems.  My mother and father named the baby Nicholas.

In my next entry, find out how it was to have a newborn baby in the house along with a dog and a handicapped son.  I’ll also get into how I came to live with my grandparents.

Have a great day everyone.

Living with CP: the early years part 42.

Hello everyone.  Before I get started with today's entry I just want to say thank you for your interest in this blog.  Yesterday was my best day for blog views since I started this blog, so please continue to tell your friends.  Now, let's get started with today's entry.

I'm going to write more about the three years I went to the hospital for therapy, and also when they decided to start me in water therapy.

When you have Cerebral Palsy, your muscles get so tight because of lack of body tone.  They have found out over the years that if you get in water that is about 90 degrees it relaxes the muscles and it makes it easier to move around.

Amazingly, when I got in that water I could hold on to a bar on the inside of the pool and walk around it all by myself with no problem.  Also, when you get in water you are lighter, so that also makes everything easier, too. 

The main thing to remember is to not stop working your body and to always try new things.  Also, don't ever give up.

Have a great day everyone.

Living with CP: the early years part 41.

I hope you all are having a great day.  Today, I'm going to continue to talk about how our vacations have changed over the years.  I will also explain all the work you have to do to make sure everything goes just right when you go on vacation when you have Cerebral Palsy.

As I got older and heavier, I have to stay in my wheelchair. A lot of people don't have to worry if the hotel room doors are wide enough to get a power wheelchair through or if the room is big enough for everyone to get around in.  Also, consider that if you don't want to drive your vehicle around town there are handicapped-accessible transportation options.

Someone can not just call one time and set up everything and be done with it. You have to call several times to be sure you have planned for handicapped accommodations before you leave.  If you don't do that, it’s likely that when you get there, something will not be right.

Also, it’s difficult to travel by air when you have a power chair.  You have to have special gel batteries.  It's also wise to have a copy of your wheelchair specs to give to the airline and even the captain of your plane.  Some of the smaller commuter airlines may not be able to fly with the additional weight of the power chair.  Be sure that if you have connecting flights that everyone is aware of the wheelchair.  Planning ahead is important.

It is also a good idea when flying to call your insurance company before you leave and see if you can take out a short-term policy to cover your wheelchair until you return.   That way if the airline damages your chair when they load and unload it from the plane, the insurance company can try to get the airline to pay to repair your chair.

You will find that through my experiences I have a lot of good information and tips.

Have a nice day everyone.

Living with CP: the early years part 40.

I hope you all are having a wonderful Easter weekend. I'm working this weekend because this upcoming week I'm going to be somewhat busy so I don't know how many blog additions I will get done this week. In today's entry, I'm going to talk about how our vacations have had to change somewhat over the years as I got older. 

As you might think, when I was younger and smaller it was easier to go on vacation than when I got older.  This is because we could just fold up my manual wheelchair and put it in the back of the vehicle and go.  Also, if someone held me up under my arms I could walk a little. That means that if I wanted to get on an amusement ride or something on vacation, someone would just lift me on it.  It's the same way with swimming. Someone could just get in with me and we would swim. 

When I got older and heavier and I got my power chair, vacations became a little harder.  We had to take our vehicle with the lift on it and it became harder to get me out of my chair.  So whatever we did, I had to stay in my chair. I could not go swimming anymore unless the pool had the lift to help me get in and out of the water. 

You would think that with the ADA (the Americans with Disabilities Act) that became law in the 80's, I could go anywhere I wanted on vacation and not have to worry about anything but unfortunately that is not true.  I will explain what I mean in my next entry.  Maybe the next time you go on vacation you will know some helpful things to do before you go. 

Happy Easter, everyone!

Living with CP: the early years part 39.

Hello everyone.  In this entry I'm going to write about how I started to learn so much about a computer. 

One day when I was about 11 years old, my uncle Tom came over and he told my grandma “Brian should start working with a personal computer.  If he learns how to use one, it will open up a lot of opportunities for him to be able to write, communicate and even play games to help him learn.  If he learns how to use a computer, it will help him do many things and have more opportunities later.” 

My uncle Tom knows computers inside and out.  He can build them from the ground up.  The first computer that be built for me was just basically for games so I could get use to the basic operation of a computer and get used to working with a trackball since I could not use a mouse due to a very limited range of motion. 

The more I got used to things, he would show me more and more. Today, I can operate a computer with the best of them.  I have been able to get special equipment and software over the years to help me operate a computer as quickly as possible, because it takes me a much longer time to type.  I’ll write more about this in later entries. 

When you are handicapped, your main support is your family.  Many people assume you don't know anything because you are in a wheelchair. 

In my next entry see how our family vacations have had to change somewhat as I got older over the years.  

Have a great day everyone.    

Living with CP: the early years part 38.

  Hello everyone.  Today, I'm going to talk about how hard it was to get me sitting right in my new chair. 

I can not just sit in a chair and be ready to go, I have to have pads for support to help me sit up straight.  Another problem people with Cerebral Palsy have is that their body shifts in a chair as the day goes on. It does not stay in one spot.  That is what happened with me.

Steve from ATG Rehab would come over to the house and make some adjustments to my seating.  He would get me looking pretty good and then about two hours after he left I would be falling over again.  We could not figure out why. 

One day Steve actually came over and stayed about five hours. He would make an adjustment to my chair and then he would watch my body and see how it moved over time.  He even took pictures and sent them to doctor Kitts and they talked on the phone many times.  She would tell him what to try next. 

After about 6 months between everyone, they got me sitting the best I ever did.  Sometimes it takes people working together to get everything just right.  It also takes time. You can't just say “here it is” and be done with it. 

In my next entry see how I got started working with computers.  Have a great day everyone. 

Living with CP: the early years part 37.

  Hello everyone.  I hope you all are having a wonderful day. I'm going to talk about the first time I got a new wheelchair after my first appointment with doctor Kitts.  Let's get started. 

Anyone out there that has Medicare and Medicaid knows that it is difficult to get them to pay for certain things.  What made my situation worse was that my five-year time period was not up on the chair I had.  Doctor Kitts said the chair I had was too small for me, but we all knew we would have a hard time getting it. 

Doctor Kitts always said that when you have Cerebral Palsy you have to sit right in your chair, so we had another battle on our hands. 

ATG Rehab sent the paperwork in for the new chair to Medicare and Medicaid. They told us it would be about 6 weeks before we would hear something.  That came and went and nobody heard anything.  Each time Grandma would call ATG Rehab they said they had not heard anything either. 

Finally, after about a year my new chair was approved and then it took another 6 weeks to get the chair.  After I got the chair I had to have all kinds of pads to hold me up right. 

In my next entry find out how we did this. Have a great day everyone.