Living with Cerebral Palsy

I am His girl! (or boy, as your case may be) Don’t you think that is the most comforting thought in a world that has gone amuck?

I hope you took the time to watch the videos from the last couple of days. Not only did she survive her mother’s attempt to get rid of her, but she has such an amazing outlook on living with cerebral palsy.

I have always known that God doesn’t make mistakes. As an adult, I also learned that He allowed me to have CP for a reason. Therefore, I should use my life as a positive example, and help others, if possible.

But . . .

I must admit that I don’t think I have ever used blessed and cerebral palsy in the same sentence. I always thought of it more as a burden I had to endure. My attitude has been more like the saying: “if your life is full of lemons, make lemonade.

But, a blessing?

This woman could have chosen to feel sorry for herself, hate her birth mother, and figure out some way to make the doctor that tried to snuff out her life miserable.

Yet, she feels blessed. After all, she is God’s girl; and, she beat them. She survived and lived to tell about it.

Personally, I hope I can change my attitude. Rather than a burden I must bare as part of being His girl, I hope I can grow to KNOW that my CP is a blessing.

Do you feel blessed?

If you think about it, almost every aspect of our lives is rated, in one way or another. If we go to the doctor, we are asked to rate our pain on a scale of 1-10. Television shows are rated; and, if they drop to far, they are dropped. Even the groceries we buy are rated for their fat content, the intensity of their flavor, the varying sizes of a product, such as eggs.

You and I even rate the level of our disabilities. We know that brain injuries are not all created equal.

Oftentimes, people will write to me and ask me a question related with their disability. But, because I don’t know them or their level of functionality, it is really hard to provide an answer that might even be remotely helpful. Some will rate the level of their disability, and that helps some, but it is still difficult to speak to their needs, because I am not a doctor or therapist of any kind. That being said . . .

How do you Rate?

When asked to describe your disability, and your abilities, how do you rate yourself?

I have written several articles about living with cerebral palsy in the past. Although that in no way makes me an expert, it definitely increased my understanding of my own disability. It also gave me a better idea of how to rate my own challenges.

In layman’s terms, this is how I personally rate CP:

Mild – People with mild CP are often mistaken for any number of typical injuries that might make them walk with a limp or a uneven gate. People might mistake them for having one too many drinks. In some cases, they might not even be aware of the fact that they are living with CP, Others find out only after they start experiencing age-related digressions.

People with mild CP lead relatively normal lives, physically speaking. They might just exhibit weakness on one side of the body.

Moderate-Self-care is possible, although you might need aids, like can, crutches, or wheelchair to get around. You might have some learning disability, but you can still function independently from day to day, with little assistance from others.

Severe – you have physical and possibly mental challenges that make it impossible for you to take care of yourself. You often need a caregiver to help you dress, take care of your home, run errands, and simply help you lead a better life.

Profound- your body is not your own. CP makes it impossible to do almost everything. You are totally dependent on others for everything, and communication is extremely difficult, if not impossible. Even if you have a brilliant mind, it is locked away. However, in many cases of profound CP, severe learning disabilities leave an individual as dependent and helpless as an infant.

I am no doctor, but this is as easy an explanation of CP that I know how to give. Being a brain injury, there is absolutely no way that any one of us is exactly the same. What is difficult for me may be easier for someone else and the other way around.

So, how do you rate?

Personally, I am moderately disabled. I was diagnosed as a baby. All 4 of my limbs are involved. But, most people don’t notice my hands, unless I need to do something with my fine motor skills. Technically speaking, I am an incomplete paraplegic. Even when I could walk on crutches, I swung from the hips. I can move my legs a little; but, not enough to do anything. They cannot hold my weight, and I have very little ability to balance, even sitting up without support.

I have lived alone, held down full time jobs, and I can drive a car. However, as I age, arthritis is taking it’s toll. My spastic muscles are stiffer and I have lost a lot of mobility. Nevertheless, I consider myself very blessed to have the abilities I have, and I am leading a good life with family and friends.

Music is great! I don’t really like rap or hard rock. I like music that is relaxing and soothes the soul, after a particularly difficult day, while doing something else, or just to wind down before going to bed at night. But, I definitely have a hard time finding the music I like. Most of it is old stuff. Plus, I prefer Christian gospel. I don’t want to listen to who cheat on who or who broke someone’s heart. I want to listen to music that will make me want to sing and be happy.

Most of the music I like dates back to vinyl records. Even if I could find what I was looking for, I am fairly certain it would be out of my price range. I am not even sure my children have seen a vinyl record. I can remember when having an eight track tape player was the new big deal.

So. . .

I did what everyone does, when they want to find the unfindable. I went to the Internet. I was looking for old gospel music. I found quite a lot that was free, and legal to download to the computer.

I found a site called: IMESH

Not only does it have a variety of old and new age Christian songs, it has music of all types. I was able to download gospel from Blackwood Brothers, Statler Brothers, Christy Lane. Because some of them were older, I was able to download whole albums. Some of the newer songs, you might only be able to download one song. If you want the album it costs. So, I just stuck to the free songs, and there was plenty.

In Sunday school we talked about always having an attitude of singing hymns. Even if you don’t/can’t vocalize them, you can sing and be happy, in your heart, all the time.

When we constantly deal with the struggles of living with cerebral palsy, or any of the other life challenges, I like the idea of being able to sing and be happy anytime, anywhere.

If you lived in Wyoming and went up to someone and said you were blown away, they very well might take it literally! I have never been to Chicago, the windy city, but I daresay that many towns in my state could take the title away.

When we first moved into this house, my son was only 5 and just a wee lad. One day he opened the screen door and got a nasty surprise. The wind caught the door, wrenched it all the way open, and he was lifted off his feet and sailed out the door. He was promptly deposited over the side of the step and into the dirt. (We didn’t have grass yet.)

Fortunately, only his pride was seriously wounded. But, the screen doors quickly became a thing of the past. Not only were the dangerous for a small boy, but they were literally being blown off their hinges.

So, for those of you that live/have been to my town, you may have cause to wonder why the wind is something noteworthy in my blog. Any other day, it might be. However, I am blown away, figuratively speaking.

I NEVER DREAMED!

A few years ago, I started a website called Writing with Purpose – the name of my business. Regardless of the amount of work I put into the venture, I was lucky to get one or two hits per day. It did absolutely nothing to promote my business and took me away from the writing that actually put bread on our table.

I was so disappointed! A colleague suggested that there were so many sites on the Internet to do with budding freelancers, which there are, that mine was just a drop in the pool of many. She suggested that I start a blog about something for which I was truly passionate – making the most of living with cerebral palsy.

Thus, Living with Cerebral Palsy became a part of my life in a literary sense!

It was slow going at first. But, it was cathartic for me, if nothing else. Friends and family would read what I had to say and comment occasionally. All I could hope was that I might help at least one other person living with/loving someone with cerebral palsy. (I know, you have heard me say that before.)

However, what “Blows me Away” is over 900 hits registered in a 24 hour period, at least a couple of times in the last week – probably more.

I want to thank my friend and former colleague for suggesting this venture; and, I want to thank those of you that read it faithfully, even when I don’t have anything profoundly important to impart.

I have made some friends via the blog. Recently, businesses and other blog owners have gotten in touch with me, in order to see if they can guest post. One gentleman wanted me to help him promote his book and blog, because I have a good Google ranking. Who knew? I haven’t been checking that.

So, I am blown away! This time, it is a good thing!

Did you know that your body talks to you all of the time? Are you trained to listen?

When I first got sick with Crohns, my husband had a six week duty assignment in Guam. The kids and I had to stay in Japan for the duration.

Shortly after he left, I got REALLY sick. At first, the docs thought it was just the stress of being apart and having two small children. I was still nursing a baby and trying to home-school a Kindergartener. But, I started to lose weight fast – approximately 26 pounds in six weeks.

On top of everything else, both of my kids came down with the chicken pox! I took them to the doc for vaccines, and another mother brought her child in while he/she was still contagious. We were all sent home. Unfortunately, both kids never needed the vaccine.

When their dad called, I told him how sick I was and that they were sick also. He told me that if I had his commander call him back, and he had to do the duty over again, he would be VERY angry.

Long story short, we were sent to my sister, the nurse, in New Mexico. As it happened, my brother-in-law was preaching in a community with an Air Force base. So, when I landed in the states, after being diagnosed with crohns, I was basically turned into a living pin cushion for test after test, as the docs tried to stabilize my health, so my mother could come get us and take us home.

Six weeks later, we came home. But, now I still had the problem of finding a doc that understood crohns, and could give me the medical care I needed to get better. This time, I had to depend on a doc that was over 2 hours away and only came to my city once every 3 weeks.

The Body Talks

In our first meeting, the doctor told me that I needed to read up on my disease. I had already read enough to know that I was really worried about my future, and the future of my kids. He told me that reading personal accounts of others on the Internet wasn’t always a good idea. Many of those folks were worst case scenarios, or people that didn’t properly take care of themselves. (They still smoked and drank alcohol – even occasionally was a no-no.)

He wanted me to learn as much as I could about crohns. In fact, it was vital to my good health! Since he was at least 2 hours away, I needed to be able to recognize the symptoms of a problem BEFORE it became an emergency. He would not be able to get to me fast enough, if it was. So, I needed to learn when it would be time for a trip to the ER, and what I needed to tell the doctors there about my treatment, so they would know how to proceed.

The Same Principle Applies

In the last 14 years, I have discovered that the same principle applies to living with cerebral palsy, or any other health issue for that matter.

When I go to the doctor, I try my best to describe concisely, but thoroughly, what pain and symptoms I am experiencing. Since having an older patient with cerebral palsy is rare, the more information I can give, the better she can help me.

For example, when I get a bladder infection, I don’t even have to go to the doctor and provide a sample. The doc knows that I definitely recognize the symptoms. I am only supposed to go in, if the prescription I pick up does not reduce the symptoms in a day or two, since it might progress to the kidneys. Again, I have to listen to my body. But, it sure is nice to avoid sitting in the doctor’s waiting room and praying my bladder doesn’t do something embarrassing before I can get back home.

You are your Best Advocate

When it comes to living with cerebral palsy, or any other health problem, you are your best advocate. The more you know, the better medical care you will probably receive. Even if you have to keep a diary of sorts, note what works and what doesn’t.

Also,( and this lesson is for me especially) don’t try to be a hero. If something hurts, and you wait until your spastic muscles seize up, and you can hardly stand the pain, it will take that much longer for medication to do the job.

In the last year or so, I have found that the pain that I am able to ignore during the day will keep me from going to sleep at night. It doesn’t have to be excruciating to keep me awake at night. If I do manage to sleep, it will invade my dreams. Sometimes, I am back to the times when I have had surgeries, etc.

Thus, my advice: when the body talks, you need to know how to listen.