Friday, January 26, 2007

Archinoetics Visit and Dr. Davis Makes a Housecall

Yesterday afternoon Evan and Erin from Archinoetics came by for a visit (they are the Brain Wave Guys). They came by to touch base with Peggy to find out when they will start working again with her on Brain Wave Painting and more research. We also had wanted to talk with them about the possibility of using their technology in the event that Peggy should lose her ocular movement. We all talked at length about this and the bottom line is that while they are more than willing to be there for Peggy with their equipment, they feel that Peggy should not rely on their technology as a means of communicating if she were to lose her ocular movement.

They told us that their technology works on an inconsistent basis and the system at this point in their development is just not reliable. They have worked with at least 2 other ALS patients who are totally locked in and have no ocular movement. With them, some days they would seem like they were 90% sure they were getting a "yes" or a "no" and other days it wouldn't work or they would be only 50% sure. So, they wanted to stress that this would not be a good way to communicate a major decision. They do hope to get funding soon that will help further their development and move things along, but they are not sure of the timeline.

Dr. Davis and Cory and Cathy from Healthcare Alternatives came by also to touch base. They were able to meet with the Archinoetics gang which is great since Evan is going to put Dr. Davis in contact with some of the other ALS patients they have worked with. Dr. Davis hopes to talk with their doctors so that he can learn more about the more advanced stages of ALS.

While Dr. Davis was there in person, he did a full exam on Peggy. Here's the scoop:

EYES: Doc did an eye exam on Peggy, testing her ocular movement and looking for any double vision. He said her eye movement looks strong and that she has pretty good "convergence" which means no real double vision problems. He looked at the stye which I realize now was on the TOP lid, not bottom. He said it looked fine.

MOUTH: He looked at her teeth and confirmed that one has shifted backwards. He did not see any of the chipping that she had mentioned. He suggested that we call her dentist, which I will follow up on. He also said that swabbing Peggy's mouth more frequently might help with the burning sensation she sometimes gets. Peggy told us that she likes the swabs.

CHEST: Said Peggy's heart and lungs sound really good

TOE: He checked out her ingrown toenail and cut a bit of the nail - ouch! He suggested weakening the middle of the toenail with a file - you'll see where he drew a black triangle on her toe to show where to file it down. He said weakening the middle should encourage the sides to grow out and discourage ingrowns.

ANKLE: He said that the pain in Peggy's ankle doesn't seem to be a real problem. He thinks that since it is "positional", perhaps her boot is pinching a cutaneous nerve where she broke it in 2002. He suggested propping the boot in a different way. Cory brought up concerns about Peggy using the chi machine so much at night. She's worried that because Peggy has lost all her muscle that her joints are succeptible to strain and dislocation. But Peggy didn't feel that it was the chi machine.

That's it for now...

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