Life With Ataxic CP

In 2003, my sister passed away. Two years later, her 15-year-old son moved in with my wife and I. Unfortunately, his father and stepmother could not handle him anymore.

I immediately contacted my attorney the day after my wife and I picked him up at his friend’s house. With my attorneys help, I was able to enroll him in 9th grade at the local high school. Luckily, he still wound up getting credit for the year.

The next 3 years came and went, and in June of 2008, he graduated from high school. In September of that year, he entered college and went there until the age of 21. Hopefully, he’ll be able to return to school one of these days.

Now, he is in Washington State working odd jobs and trying to figure out what he wants to do with the rest of his life.

I am so proud to have played such an important part in his life for those years. I wish him the best.

It has been over a month since my last post. Way too long to be away. I know I said that last time, but I mean it this time. As you know, I’ve  been rehabbing my knee lately. I am working very hard to get back the strength that I lost during my most recent injury. I’ve been exercising like crazy and happy to report that I expect not to need knee surgery. Not yet, at least. I will eventually need knee replacement surgery because of a couple of bone on bone conditions in my left knee, but I’m trying to put it off as long as possible.

In addition to all the physical therapy and I’ve been doing for my knee, I’ve also been working very hard at my job and putting in a lot of overtime. Thank God that the project I was working on is now complete.

Anyway, it’s good to be back.

I’ve been a stranger lately. I apologize for not posting in almost three weeks. But, I’ve been real busy.  Besides rehabbing my knee, I’ve been trying to survive a hectic environment at work, trying to be a father to my nephew as he starts a new life in the state of Washington, and learning the ins and outs of my new Apple MacBook Pro.

I will be discussing these things more in-depth, as well as some other things that have recently happened to me, in the not too distant future. So, keep on coming back.

In the meantime, I’m going to finish reading my book on time management.

Living with Ataxic Cerebral Palsy, I’ve had my share of weird accidents.  Although my mishaps happen much less often as an adult than as a child, I still have some every now and then.  Here is one that happened just a short time ago.

It was Sunday, June 26, at 9 PM.  I drove to the local convenience store to get a carton of milk.  I got to the store, found a parking space, and got out of my car.  The store door was on my left.  I stepped up a curb about six inches high.  I was leading with my right leg.  As I lifted up my right leg, I began to lose my balance on my (base) left leg.  So, I abruptly shifted my weight to my right side and stepped hard on my right foot.  This caused me to stumble face first into a metal pole.  When I hit the pole, I just collapsed straight down.  I twisted my left knee, which already has a bone on bone condition, and let out a scream.

I went to the doctor the next day and he took an X-ray.   A few days later, an MRI was taken.  The good news is that there is no ligament damage.  The bad news is that I tore the cartilage on the left side of my left knee.  I now have two bone on bone conditions in my knee.  I start physical therapy next Monday.

This is the fourth in a series of short stories about my mother. To read the first one, please click here. To read the second one, click here. To read the third one, click here.

This story takes place (probably summer 1999) before I was married and before my wife and I moved in with my mother.  Also, my mother’s aide was off that day.

I didn’t get involved with the days events until I got home from work around 6 PM.  The first thing I did that day when I got home from work was check my phone messages.  One of the messages was from the local hospital informing me that my mother had some sort of accident and was brought into the Emergency Room.  I immediately rushed to the hospital to attend to my mother.

When I got there, I found my mother with scrapes and scratches all over her face.  Luckily, that was the extent of her injuries.  I also found out that she was taken to the hospital by ambulance earlier in the day.

I tracked down one of the witnesses to the accident, who turned out to be a customer service representative at one of my mother’s local banks.  She (the representative) told me that my mother tripped off the curb across the street from the bank.  From there, I was able to put together the facts.  It seems, my mother decided to take a walk to the bank that day.  The bank was over a mile away from her house.  How she remembered her way to the bank, I don’t know.  How she made it from her house to just across the street from the bank, I don’t know.  She almost made it to her destination.  Thank God her injuries weren’t too serious.

One of the first things I noticed about my new Iphone is how difficult it is for a person with manual dexterity problems to hit the correct keys on the virtual keyboard.  The proximity of the keys and super sensitivity of the touch screen made texting and emailing almost impossible.  I was extremely frustrated.

The next day, I decided to google “iphone touchscreen sensitivity”.  I didn’t find a way to adjust the sensitivity.  But, I did find out something else that was very helpful to me.  When keyboarding and hitting an incorrect key, you can just hold the incorrect key down and slide your finger over to the correct key.  In other words, if you hit a “g” instead of an “f”, just slide your finger (without picking it up) from “g” to “f” and release.  Try it!

Keyboarding is not much of a problem anymore.  I now expect to be able to take full advantage of all the features of the Iphone.  The more I learn about it, the more I love it.

Ataxic Cerebral Palsy (CP) is sometimes mistaken for Multiple Sclerosis (MS) and vice versa.  Both may have many of the same symptoms, such as muscle incoordination and weakness.  MS is a progressive condition and Ataxic CP is not.

MS occurs when a person’s central nervous system (CNS) is attacked by their immune system.  The CNS includes the brain and spinal cord.

MS can affect any part of the CNS.  But, when the cerebellum (motor control part of brain) is affected, muscle incoordination and weakness (Ataxia) can occur.  Ataxic CP also involves damage to the cerebellum.  For more information on Ataxic Cerebral Palsy, please click on my Ataxic Cerebral Palsy Factsheet.  Please click here for more information on MS.

My friend, Andrew has Cerebral Palsy.  But, you’d never know it.  Andrew had surgery to loosen his tight hamstrings at a very young age.  In fact, his surgery was probably one of the first successful surgeries to treat Cerebral Palsy.

I first met Andrew at school in 1975.  We had some of the same classes together.  The next few years saw us graduating high school, graduating college, and starting a career.

Andrew and I still friends after all this time.  In fact, we meet for lunch every week.  Our offices are only about a mile apart.

For more information about orthopedic surgery for Cerebral Palsy, please click here.

Please feel free to leave a comment.

A few weeks ago, I bought a knee unloader brace to relieve the pain of my osteoarthritis.  As a result, I am able to keep myself in shape (again) by long distance walking.  My favorite shoes to wear for long walks are MBT shoes.

What are your favorite shoes for long walks?

I’d like to take this opportunity to revisit my first post.  It is my first attempt (ever) to increase disability awareness.  You may click on the link below.  After reading my first post, click on “If Possible, Treat Your Disabled Child Like a Non-Disabled Child →” to advance to my second post.  “Bullying and the Disabled →” to advance to my third post.  You may advance to see all posts in ascending date order.

Anyway, here is my first post.  Please share your story.