National Cerebral Palsy Day (2018)

October 6 is this year’s National Cerebral Palsy Day. I was born premature weighing just 1 pound 5 ounces and was only 12 inches long. Part of the effect of my early birth is that I have mild Cerebral Palsy.

According to National Institute of Neurological Disorders and stroke, (Cerebral Palsy) “Refers to a group of Neurological disorders that appear in infancy or early childhood and permanently affects the body movement and muscle coordination…” Basically, Cerebral Palsy (CP) is where the brain and body, mainly the muscles, do not connect which can cause a variety of symptoms and effects which can vary from person to person.

While I was looking at the symptoms of Cerebral Palsy, from the same website,  I recognized that I had some of them which was recognized in my childhood.

“Variations in muscle tone, either too stiff or floppy.” For me this meant that my muscles were to floppy and to help make the tone much stronger I received physical therapy from a young age  until the sixth grade.

“Shaking or random involuntary movements” When I stopped and looked at this symptom I actually thought I did not have this until I remembered that sometimes my finger or leg will shake with no known cause.

“Delays in reaching motor skills milestones” For me this was a lot of the thing’s babies do that parents go crazy over sitting up, crawling and walking. My mother told me that it took me two years to learn how to walk instead of one year.

“Problems with drooling and difficulties swallowing or speaking” I had to have speech therapy when I was young. I drooled a lot as a child. Now that I am an adult I do not have that much problems with drooling except for when I am sick or from the effects of wearing my night guard at night.

“Problems with writing and dressing” For me, I struggled with buttons when I was really young, however I had a tool to help me with that. I also struggled with writing. However, with lots of help from physical and occupational therapy I was able to gain my independence with dressing myself and I was able to write. Now that I am older technology has taken over and I type more than I write.

Even though technology has taken over that is not an excuse to not keep my body as strong as it can be. For me, I try to walk as much as I can, I write from time to time, and I bring out the stress ball and play dough.  The most annoying thing about Cerebral Palsy is not feeling as strong as I want to be on my left side, which is mainly in my hand, and very rarely do I have pain in my hand or in my hips or legs. However sometimes I just stop and take a break if it’s from physical writing or to help my hips and legs I do some stretching and taking a warm bath with lavender soaps or bath salts helps me relax. Even though I have these problems that has not stop me from being the best person I can be. I just have to work harder at it. On a sadder note, I saw more effects of Cerebral Palsy that make me feel lucky that I am not as bad off as others with Cerebral Palsy. I hope that one day there will be a cure for this condition and people will have better treatment.

To learn more about Cerebral Palsy:  https://www.ucp.org/ or http://yourcpf.org/

 

 

 

 

 

 

Happy National Cerebral Palsy Day!

Happy National Cerebral Palsy Day

Today, is National Cerebral Palsy Day.  I have Cerebral Palsy, and I’m happy that I have the function that I do, that said, it took a lot of work.   I had countless hours of Physical therapy and Occupational therapy.

When I was little a lot of people had doubts on if I was going to be able to walk, talk or even write. With help from therapists, and my mother, I am able to walk, talk and have decent handwriting. But that drive also had to come from me. When I was in high school, I started having problems taking my notes during class.  I had to start typing my notes, and I had to start doing exercises to help improve my muscle tone. Now, things are better.

However, some children and adults  aren’t so lucky to have the function that I have-they have to have a lot of help.

To learn more about CP :

National Institute of Neurological Disorders and stroke

 

My handwriting when I was in 2nd grade
My handwriting when I was in 2nd grade.

The Disability Misconceptions Tag

  1. What is your disability and how does it impact you?  Well, actually I have three disabilities. I have Dyslexia which effects my ability to spell, read and sometimes write. Despite this, there are ways that I can achieve success everyday. I had training on how to read, write and spell with my condition when I was in Elementary school. The teacher taught me techniques to help me read, write and spell with confidence. On top of this, I use my Apple Iphone which includes the accommodations of, Siri and voice over. With these accommodations in place, I can write amazingly.   Another disability I have is mild Cerebral Palsy. From the time I was young until I was in middle school I have had countless Physical and Occupational therapy sessions. These sessions helped me gain strong muscles in my hands and legs and confidence.  Now the only time I really have a problem is, on a rare occasion, I get hand cramps from writing too much, or having a hard time opening a jar. Both of these can also be overcome. For my hand cramps I can over come it  by taking a short break, When it comes to opening a jar I can achieve this by using a gripping aid that you can find most anywhere. The most impactful disability would be my low vision, which is caused by a rare eye condition called, Nystagmus. To read more about Nystagmus click the link:  Nystagmus Tag (Nystagmus Awareness Day)   Nystagmus effects me on a daily basis. For me personally, Its like looking through a piece of clear Saran Wrap-So my vision is blurry.  To help me achieve success I use a screen reader, called ZoomText and an accessible print to text reader called Kurzweil 3000. With the use of these items I can achieve anything.  It also impacts my ability to drive. I have to rely on public transportation; and that’s okay, there are many people, like me, who have to travel with the help of public transportation.
  2. What is the most common misconception that you come up against with your disability?

For me I hear all the time, “You don’t look disabled.” this really hurts my feelings when people say this to me. I feel that people don’t understand the condition. The fact is there are a lot of people with Nystagmus who wear glasses, just like I do, and they can achieve amazing things.  Nystagmus effects everyone differently and that’s okay. That’s what makes each of us unique; and gives us all different kinds of strengths and weaknesses that we can work with.

3. What misconception annoys you the most?

I actually have two misconceptions that annoy me: The  first misconception that annoys me the most is hearing, “you’re visually impaired, so you must not able to do…” The fact is people with Nystagmus can do a lot of things, it’s just that we may have to have certain accommodations, such as a screen reader, to help us achieve success.

The second one is, “Oh, you have low vision, you must be on government aid.” The fact is the condition varies from person to person; and not everyone gets government aid, or they may get different forms of government aid.

4. Do you do anything to combat these misconceptions?

I do my best by trying to educate the public on Nystagmus and the kind of help that there is available to people like me. I’m not alone. There are support groups like the Nystagmus Network: Facebook page for the Nystagmus Network and The American Nystagmus Network: Facebook page for The American Nystagmus Network. With the right support, and by educating the public, a lot of the negative misconceptions  that are heard can be bursts like bubbles and the correct facts made available. This can help the disability community shine.