Living with Cerebral Palsy

When I was married, my husband was in the military. When my daughter was 2 1/2 he was transferred to a base in Japan. Growing up in the Midwest, I never imagined living overseas. But, there we were. In fact, my son was born in Japan.

Today, I am that much older and slower. No longer married, I moved my kids back to my hometown, and I am quite content to stay put. The farthest road trip I have taken in the last 10 years is my daughter’s college campus. But, I still enjoy traveling around the world.

What?!

Surely, I just contradicted myself! How can I be a homebody and still enjoy traveling around the world? I must need to go back to bed for a bit, or a least get a strong cup of coffee!

Not really. You see, I can go anywhere in the world. In fact, I can go anywhere in history. I can even travel to places that don’t even exist. I read books. I love books! Even if my body sometimes feels like a prison, books set me free!

When I am reading a book, I go wherever the author takes me. I forget that I am living with cerebral palsy. I forget what hurts. I also forget the house isn’t as clean as I wish I could make it.

I am old fashioned I guess. I love holding a book. I like the smell of new books. A library is great. But, I like owning my own books. It’s definitely one of the GOOD things I passed down to my children.

In fact, it’s because of my son reading a book last night that made me think of this post. I would ask him a question. He would answer and then tell me not to bother him. He was reading!

How you can do some Traveling

I am very blessed! I can go anywhere with a book in my hand. But, some people living with cerebral palsy aren’t as fortunate. Physical limitations make it impossible to hold the book and turn the pages. Many can’t see the pages because of poor eyesight. So now what?

Last year, my mom bought a Kindle. My aunt has macular degeneration, and she already had one. She can make the print bigger, so she can see it better. Turning pages is no longer a problem, because you literally scroll through the book. It’s turned into a great disability aid for some.

Unfortunately, if you are in the same boat as me, you don’t have the spare change to buy this technological wonder. Besides, if it’s difficult to read, the device still won’t help you.

So, I want you to know that you can find many books TOTALLY FREE online. Just Google “free online books” and you will be surprised at the resources you will find.

Next, download free text-speech software, and you are on your way to places unknown. Fiction, non-fiction, sci-fi, autobiographies, history, classics. Some books you can download. Others you can read online. Just select your text with the software, close your eyes, and begin your journey. Although I love to read a physical book, I also love to listen to books, especially when my eyes are tired.

So, if you can travel, where do you like to go? If you can’t, where would you like to go? Maybe we can find you a book to take you there.

Sometimes, when your are living with a disability like cerebral palsy, the simple pleasure of life are few and far between. Taking a shower, getting dressed, eating, and all of the other basic necessities of life take just that much longer. Then, lack of ability steals chances for some of the joys that other people take for granted.

But, a couple of weeks ago, I was given the opportunity for one of those simple pleasures that many people take for granted or do out of simple obligation-walking the dog.

When I was on my crutches, walking a dog was impossible. I walked slow. If the dog decided to pull just a little too hard, I was down and unable to get back up. So, the best I could do was fence in a yard and hope the dog ran back and forth.

Then, for my graduation present from college (to myself) I got a little puppy. He loves to run! My kids think he is stupid. (they love their cats) But, I know better. He knew how to run under my wheelchair if I opened the door. He learned to dig under the fence and go for a run. I would get in the car, chase him down, and offer him a ride to get back home. But, I could never take him for a walk.
That all changed two weeks ago, when a friend gave me a used electric wheelchair. Still other friends bought a new battery for it. I feel like I have a new lease on life!

Now, I get the leash out and the dog turns circles in the kitchen! He doesn’t try to get out the door. My mother lives on the same block. We go for visits. I can go into her garden and actually off-road into the grass up and down hills. Last week my son and I walked the dog to the park. We actually met a herd of antelope (Only in Wyoming! What can I say?)

I can get a glass of tea and actually make it to the table beside my chair. I ask my son a lot less to fetch or carry something for me. He likes that!

So, what disability aid makes it just a little bit easier to live with cerebral palsy? What is a simple pleasure that you enjoy?

When I was younger, even living with cerebral palsy, it was a lot easier to get around and accomplish the tasks I am able to do for myself. Granted, I will never be able to change a ceiling light bulb, but I can take care of my own basic needs, cook-if I have too, do household chores, and basically get by enough to live independently with a disability. However, with age, I have come to really appreciate those inventors who’ve created tools to make our lives a little easier; and, I want to tell you about my most used disability aid.

Never Leave Home without It

I actually forget which commercial it was, but I remember a company advertising their product with the slogan ‘never leave home without it’. Well, that is how I feel about my ‘pinchy stick’. Actually, the appropriate term is reach extender. I use this device for so many daily activities, like dressing myself, that I am really in a pickle if I go out of town and leave it at home.

In fact, I wish I had a reach extender for every room in the house, because I am always laying them down somewhere. Then, I freak out, if I can’t find them. I am always asking the kids if they have seem my ‘pinchy stick’.

My Multipurpose Tool

I use my reach extender in every room of the house. In fact, it would make grocery shopping a lot easier, if I took them to the store-for reaching those higher shelves.

In the laundry room, I use them to pick up the laundry and put it in the washing machine. Unfortunately, I also use them to pick up trash in that room, when my son leaves things in his pockets.

In the kitchen, I use my ‘pinchy stick’ to grab lightweight dishes off of the higher shelves. If I drop something on the floor or need to use a towel to mop up a spill, they also come in handy.

In the livingroom, I use them to pick up stuff off the floor. My son has this annoying habit of leaving stuff laying around. He also likes to work on art projects, while watching television. It seems like there is always crud on the floor.

Unfortunately, he is not always the most observant. He will leave paper scraps on the floor that will clog the vacuum cleaner. Of course, I am not the neatest individual on the planet either, so they are just great for helping me pick up the house.

The bedroom and bathroom are when I use my reach extenders the most. They help me get dressed every day, put my shoes on and off several times a day, pick stuff up off the floor, extend my reach to pick something up, if I do not want to transfer into my wheelchair and go get it.

I went to Amazon.com, in order to find you a picture of the reach extenders I use every day. But, when I went looking around, I actually found some that I think would work better. In fact, I may have to get some for myself. I know they are at least a foot longer. Plus, instead of pinching what I need to pick up, they look as if they grab more like a hand would.

Not just for People Living with Cerebral Palsy

Of course, reach extenders are not just for people that live with cerebral palsy. My son borrows them to reach an object that has fallen behind the furniture.

My mother, who suffers from back and hip problems, uses them to pick stuff up. It is a lot easier and less painful than bending over. Some people are just shorter than average, and a reach extender is a lot easier than dragging a stepping stool around everywhere.

The Idea is Independence

For me, the whole idea behind using the reach extender is using a tool that enables me to live as independently as possible. I may get dressed differently than an able-bodied person, and it may take me longer, but I get the job done. The activities that most people take for granted, and do without giving it a second thought, can be made a lot easier, as long as I am never to far from my most-used multipurpose disability aid.