Tuesday, February 26, 2008

A Triumphant Tale

Hello everyone.
It's been exactly 3 years and 1 month since my ALS diagnosis. At times I get the feelings that this is just a bad dream and I will wake up with my old body. I know that my subconscious has not accepted my condition because all of my dreams have me walking. Luckily I'm a member of world wide organization (Living With ALS-LWALS on Yahoo) whose soul purpose is to provide a support network for PALS and CALS. The LWALS Internet Forum is filled chock full of information that helps me deal with ALS. Recently, there was very exciting news like this (a 10 year study resulting in finding the single gene that causes ALS). Here's the link:


Well ERICA is going great. She is allowing me to type faster and faster. I only have to stare at a letter on the keyboard for 0.7 seconds before she triggers a mouse click (I started at 1.0). I hear that other PALS have their ERICA's set at 0.5 seconds. As long as I have done a good job of calibrating my eye with ERICA at the start of the day, everything goes fine. During the day, I can even take a natural break, drive my wheelchair away then drive back to ERICA recalibrate and keep on working. I appreciate the way that ERICA is designed so that I can calibrate my eye without any assistance, except in the mornings to start up ERICA. About three months ago I received an upgrade to ERICA's program and now I can do more on the Internet. Surfing was hard using the old program. You could forget about doing a cut and paste, but now no problem. But what makes me excited is that I'm learning how to do everything that I used to do with my fingers and a keyboard, I can now do with my eye and ERICA's on-line keyboard. For example, most people I know are aware of the short cuts in Windows like Control A - to to select all text. Well with ERICA the Control key is not on the regular keyboard in ERICA. Real Estate is tight on my ERICA screen. Because I have to see the document or window that I'm typing on AND be able to see the keyboard so I can choose my letters (As you can see in the video below). ERICA is made up of many menus. I'm having to memorize what's on all the menus and where each key is located and how do I get to it. With each day I gain more confidence and with hope that someday, I can say that there is nothing I can't do.

Why did I spend all this time telling you this? I'm trying to express to my fellow PALS who might be interested in obtaining ERICA that she is not perfect. No computer system is without flaws. I suggest that you talk with a user in addition to the salesmen. So I will end this discussion about ERICA with a joke.

What is the difference between a computer salesman and a used car salesman?

[the answer is at the end of the Blog]

I just finished a giant software upgrade project for my Boy Scout troop. As you might know I'm one of the leaders in charge of our troops record keeping application. Kind of like what I did at FedEx. A few years before Chris and I joined, the troop bought Troopmaster. The system keeps track of the boy's advancement records and activities. It's on a server somewhere out in cyber space. I have 8 leaders using it. We print advancement reports for the scouts and camping rosters for the adults. Well we went from a 2005 version to a 2008 version. I did the data conversion last Saturday. Now I'm assisting each user with their upgrades on their computers. I'm very satisfied because I typed the installation guide from scratch with my eye! And the work reminds me of the good old days when I was a Business Systems Advisor (a Guru computer guy!) with FedEx.

I'm taking all my nutrition by a tube in my stomach. Actually I had the tube for two years now. Last year I made the mistake of trying to get all my nutrition by mouth. It took so long to eat and I ended up coughing all day and night. I lost 15 pounds last year as a result. Another reason is I could no longer swallow my vitamins and medicine pills. So when I stopped eating by mouth in the fall it didn't take long for me to gain my weight back. The formula that I'm drinking via my tube is packed full of healthy ingredients plus the liquid vitamins Hing found on the Internet for me. I don't taste food anymore. But I enjoy smelling food. This disease causes a person to go through so much misery by coughing and gagging to the point where you don't care about eating anymore. A very strange thing since our civilization is centered around food. If I were to say that I don't miss eating, I would be a liar. But I equally don't miss the misery that I went through. I even made it uncomfortable from my family to see me in agony. I have always been a person that accepts the cards that I was dealt. So here I am taking each day as it comes.

[the answer to the joke is "The used car salesman knows that he's lying !]