Wednesday, January 30, 2013

Ethan's 8th Birthday was better than his 7th!

On my son's 8th birthday, it was a very happy day. We had a lot of fun, and we were blessed to have such a great kid. I will never forget his 8th birthday. January 27, 2013.

Compare January 27, 2012. That was the day that I got out of the hospital. I was dazed and confused. But, I wanted to celebrate my son's birthday. We went to Red Robin by the Boise mall. It was a Friday night. It was busy. It was crowded. The sounds, the lights, the activity! Too much!

To say that I was nervous was understatement. I was scared.

Then, I had to go to the restroom.

The journey was long and tough!  I did not know what to do.

Then, my 7 year old son, grasped my hand and guided me through the restaurant. He held the door, and waited. When I was finished, he held my hand, and made sure that I was safe.

7 years old. He had to grow up too fast because of me.

One year later, he is 8. He is funny, talented, smart, irreverent, energetic, and curious.

On Ethan's 8th birthday, I ran some errands. I drove alone. I went to Home Depot. I shopped at Fred Meyer. It was a beautiful day, and I treated my self with a chocolate milk shake.

I felt so normal. And grateful that I feel so normal.

Later, we went to Red Robin. We laughed. I went to the rest room -- alone!

When we were getting ready for bed, I told Ethan that I loved him so much. He said, "I love you too Daddy." Then he fell asleep.

What a difference a year can make.

I am so blessed.

Saturday, January 19, 2013

Stroke resources and technology

The concept of written communication was something that I to for granted before of my stroke.  Intellectually, my brain just…well…it flowed. I wrote a lot. I read voraciously.

When the aftermath of the stroke finally dawned on me, I was horrified because I could not read or write. My hobby was reading – sometimes reading three or four books at a time – and writing.

My recovery was tough anyway so I didn’t really think about it…communication.  When you cannot speak it seems there are other priorities rather than reading or writing!

But, along about March, I realized that I was missing a lot because I could read or write. I was a news junkie but, other than TV news, I was missing so much
I felt like I was in a bubble of confusion and despair anyway and this compounded my frustration. Frankly, I was pissed off in general, and this was the icing on the cake.

Lo and behold, one of my therapists at Saint Alphonsus Rehabilitation Services (STARS), told me that there are “app’s” that might help me. Though I don’t like Apple products, Elizabeth told me that a cheap app called “Speak It!” might help me. She said I might try it. If that helps, there might be some other apps that might be useful
So, I purchased the app, and this is the description?

“Copy emails, documents, web pages, PDF files, and more; paste them into Speak it!, and have the text spoken back to you with the highest quality text to speech engine available anywhere. You can even create the same quality audio files of the text to speech which can then be emailed to anyone you like! Need an elegant way to make announcements over your PA system? Speak it! can do that too. You can easily set up a list of pre-made announcements, and play them with a press of a button. You can even use Speak It! as a fun way to prank your friends! Speak It! is your own custom soundboard, with endless phrases and possible uses.”

At that same time, another of my therapists, Heather “S” told me that I needed to work on my math skills. Really. Math. Oh my God.  That was like a rubbing salt in a wound. 

Plus, my wife’s name is Heather, and I had two therapists at St. Al’s also named Heather…I believe that was undue torture because I had enough trouble remembering names! Was this a plot! LOL.

Anyway, when Heather Sullivan told me that I need to practice math, it was daunting. She gave me homework such a simple math. Addition, subtraction, etc.  I found out that my First Grade son was doing the same problems. But, Ethan was successful. Not me.  It was madding.  I was a math whiz throughout my academic career. In college, it was the same. Calculus, statistics, trig, etc. 

All gone.

I struggled on. Finally, Heather Sullivan told me I should be using a calculator.  What! “That is cheating” I said. I told her that the underlying concepts had to be done “by hand.”  She laughed, and said something like, “just pick your battles, and use the tools that make your life easier. In time, you will get back your skills hopefully. But, stop beating yourself up.”

That helped me a lot. I realized that just like the “Speak-It!” app, a calculator is a great tool if I simply accept it.

So, I found a lot of other apps that helped also.  One, “Predictable” was expensive ($200), but it helps find words.  Aphasia is a awful condition, but that program helps me find “words.”  Here is the description:

“Predictable is an exciting text-to-speech application for the iPad, iPhone and iPod Touch. Offering customisable AAC functions with the latest social media integration, Predictable sets a new benchmark. Using a word prediction engine and switch access, Predictable meets the needs of a wide range of people using AAC. A wide range of people are using Predictable, including those with MND / ALS, Cerebral Palsy and people with communication difficulties after a stroke or head injury.”

What! I had a stroke! Just kidding.

Another great tool was the iPad.  The ease of use, the applications, the programs, etc. were incredibly helpful. Soon after my stroke, St. Al’s told me that I should use the iPad. Because I could not speak well (at all), I initially used my iPad to describe common “wants.” Such as, what I like to eat, by background, etc.
I made lists that I still have. The lists show what was very important for me to convey to the “outside world.”  If I could not speak, my lists illustrated my life. My families’ names, “MY” name (what is a “Mark?), my home town, my interests, physical pain (how do you explain the severity of a headache when you cannot speak?), my job, etc.
I am keeping those lists to remind me about how far I have come.

I long way.