Friday, August 10, 2007

August Update

I was hoping by this time I would be writing this message using Erica. But Erica is not that easy to master. My biggest problem is getting the mouse pointer to the right place on the screen. I'm finding that when I look at an object on the screen, sometimes the mouse pointer goes there and other times it won't. It can be frustrating, especially when I'm use to having full control. Fortunately, I'm getting good advice from a PALS of mine who is an Erica expert. I met him through the Living With ALS on-line support group.

Above is a photo of me with Erica behind me. I'm a Skallywag. Look that one up in your dictionary. And yes, I'm growing a mustache.

A friend of mine wrote this at the start of an article on ALS awareness for the Denver Post in Colorado...
'Have you ever had a dream where you’re completely paralyzed? You can’t run or walk. You can’t move your arms or scream or make a sound - you’re terrified - then you wake up…relieved it was just a dream?'

Well, lately when I wake up from sleeping and my body wants to stretch, I try to move but can't. My muscles are so stiff, they won't respond to my commands. My limbs are too heavy for the remaining muscles to lift. It takes full concentration to move my muscles. How am I doing? In a word, weak. I can't stand on my own. I can't talk. My caregivers read my lips. I can't feed myself. I get the majority of my calories via my peg tube each day. I'm worried that I might loose my ability to drive my wheelchair soon. My hands are starting to club. Soon I won't be able to move my joystick as you can see in the picture below. So I'm working frantically to transfer my programs from my laptop to Erica. Here's a photo of me operating my joystick...

Hing, my wife, and I are constantly reinventing how to take care of me. She's a master problem solver. I love her dearly.

The good news is I'm in no pain and I can still eat a little. My breathing is good and I normally get a good nights rest. I love to go out. Yesterday, Hing took me for a haircut. I was excited just to be out of the house. As an added bonus, Hing drove to a carwash and I cheered on as she washed our van. I also made it through this year without catching a cold. My relationship with my family couldn't be better. My three week visit with my Mom was fantastic, she always pumps me up. Her next visit will be in October for the ALSA Walk to D'Feet ALS.

Chris is driving now, he just got his permit. He's doing good so far. Next to Hing, Chris is the best caregiver a father could ask for. I'm grateful. Chris is very good with computers now. Last night we trained Erica how to operate the TV while I was in bed. That was cool.

Major projects are - Erica, family history, reading my book, Boy Scouts, building my music collection, and trying not to be a pain.

Well there it is, the bad and the good.