Yipee! I received my new Eye Response Systems (ERICA) computer yesterday after waiting nearly 4 months. I set it up and had it running in minutes. I was able to calibrate the system to follow the movement of my eyes on the first try. It worked great as a speech generator, but then I realized I couldn't access any of the other functions of the computer such as access the internet, email, word processing, etc.  I also couldn't access the environmental controls that will allow me to control the TV, VCR, bed, etc. Apparently those functions have been locked so I can't access them. I emailed the manufacturer, and they informed me that since Medicare paid a small portion of the cost of the $9,000 tablet PC based system, the computer has to be sent to me as a "dedicated” communication device. In other words, Medicare requires the manufacturer lock the tablet PC so only the speech generation device works. I was vaguely aware of this. The kicker is that the manufacturer is charging me $600 to unlock the system...and they can't (or won't ) unlock it until Medicare has made their payment, which will likely take 2 to 3 months.

 

I'm thankful to have this cutting edge system, and my kids and their friends are in awe of how my eyes can control the cursor as if I were using a mouse. I haven't been been able to turn the TV on or off in months, though. I was sooo looking forward to being able to control the TV, so I wouldn't have to continue to wake Tara up every night to turn it off. Oh well...I've waited this long, what's another few months. Yet another lesson in patience.

Talking has become much more difficult for me in the last 6 weeks, and people are having a harder time understanding me, especially in louder areas like the car, the mall, sporting events, etc...or pretty much everywhere I tend to go. Therefore, I've begun the process of purchasing a communication device. I've ordered a cutting edge tablet PC that I will control using only my eyes! This computer is specialized for people with ALS. It will perform 3 functions for me that I used to take for granted:

• Communicate. It will allow me to type text and then convert the text-to-speech. To hear computer generated speech, click the play button on the Windows Media Player to the right. I will also be able to type email, play games, etc.
• Surf the Net. The tablet PC runs on Windows XP, and has wireless internet capability. and
• Environmental Control. This computer will allow me to use my eyes to control the TV, DVD, ceiling fan, the bed, or anything else you can control with a standard infrared or RF remote control. If I could get it to scratch the top of my head, then it really would be amazing!

Below is a link to the company that makes the Eye Response technology.

http://www.eyeresponse.com/Disabilities/

 

Those of you that know me know how much I love technology.  As a technofile, I am always researching technological solutions to assist me as my body continues to disintegrate.  Over the next several days, I thought I would tell you about a few of the cutting edge solutions I am investigating. 

 

Recently I read about an experimental procedure, called diaphragm pacing, that can potentially help a person breathe even after the nerves that control breathing have ceased to work - as they eventually do with ALS patients.  It is the inability to breathe that eventually kills ALS patients.  Christopher Reeve was the third person to undergo this experimental procedure.   The implanted electrodes stimulate the phrenic nerve causing the diaphragm to contract, which in turn causes air to enter the lungs.  Today I received word that I am being invited to be one of 10 ALS patients to participate in this FDA approved clinical trial.  Six of the 10 have already been selected.  I should be going to Cleveland for an evaluation in 3 weeks or so.  Please pray that this procedure is effective and that I am selected to participate in this study.  I'll keep you posted.