[lisag]

Hi,
I posted a few times about Gary communicating with Neuroswitch , a non- invasive painlesss sensor --that uses very technology similar to an EMG fo communicate --infact disc EMG dry sensor pads are used to operate it on his cheek--though it is completely painless --


I thought I would share a picture of him using it with you guys--- and let you know as well today a segment will be aired locally on WOWT- on the 5 o'clock news - our NBC channel here in Omaha ---


For those who can not watch or see the television airing in our area --I wanted to share pictures of him using it ---unfortunately as this is just a still picture that I am posting -- you cannot see exactly how it works -- but it gives the general idea--of how it works --

http://www.controlbionics.com/

The other computer sitting on the table is not being used any longer -- it was a demo incase it was not compatible with his Freedom 2000 -- but " as it is compatible it was not a problem-" - he was able to use it to scan letters with EZ Keys -- EZ Keys is not required to use it -- but Gary prefers it -- as otherwise on the demo computer he was only highligting already wriiten sentences and phrases-- that are not his original words -- my husband is a stickler for wanting to say "exactly" word for word what he wants to say --and although it was much faster to use that way --he prefers to use his own exact words and sentences to communicate --

Gary's case is a featured testimonal on Control Bionics website --the quoted statements were quoted very accurately -- with one very minor exception --nothing else worked as well-- instead of nothing worked -- should have been the most accurate quote from me --as Gary was at the time before using Neuroswitch able to use the Tash switch --although 3 times slower -- and with great exertion -- it was a growing concern to me that he would become locked in if something was not found soon --as he failed eyegaze trials , outprogresed the headmouse years ago-- and had tried numerous other switches without any success--if the Tash switch failed in the near future -- I was concerned he would become locked - in -- or reduced to blink communicating to alphabet boards --

Also although Gary muscle requirement is almost effortless -- you can not even see any visible movement in his forehead -- or upper cheek area as he uses now when he types with it --I do not want to give the impression it is lightening fast either in his very advanced state --he was typing an average of about a word a minute --prior to Neuroswitch--it is three times faster now but still not lightening fast --I just do not want to give a misleading impression --though others in early stages may be able to type much faster on it --and to those who are OK with highlighting pre programmed phrases -- it works faster that way as well--


It is amazing technology , especially considering his very advanced stage , and we are quite thankful for it -- as it has reduced stress of communication quite significantly -and the fears of him becoming locked in in the near future --

In this picture Gary is using it on his forehead -- however -- on his cheek is where we have it work the absolute best in his case -- this picture was taken during the intial trial period --in this picture he is using three seperate square EMG pads--and was the first site found that worked --



It is not currently covered by Medicare -- however the VA due to Gary's service connected disabilty and level of impairment -- decided at a regional board hearing in Washington DC to cover it in his case -- he was the first to have it covered by the VA --my hope is that it will open the doors to future coverage if it is needed by other PALS-- Lisa

[BobbyB]

[lisag]

Thanks Bobby -- Lisa

[lisag]

Hi ,
I now have the actual video footage of WOWT's broadcast on Gary using Neuroswitch .

Just click play on the link below for anyone interested in viewing it.


http://www.youtube.com/watch?v=ykDvZSlaleM

[Alffe]

Lisa thanks for sharing that awesome footage. You have a beautiful family!

[lisag]

Thanks Alffe,
I was really pleased with the way the story was presented.
Gary has had ALS 8 1/2 years . and I know it is quite frightening for earlier stage PALS and slower progressing PALS to even comtemplate the advance stage he is in .
However, it does to me demonstrate , that with the right equipment , he can be comfortable and find quality of life.
That the abilty to communicate is not just a human desire , but a basic need.
And when those needs are met , it can mpact a persons life quite significantly.
To me , despite Gary's late stage , ihis story was presented in a very positive and upbeat way.
An attitude our family definitely tries to keep , in managing and coping with the disease.
You can see a very genuine " Gary smile " and our daughter jumped up right on the bed next to him playing with her Webkinz. The equipment does not intimidate her one bit. To her its just her Dad's voice.
I hope in the end it alleviates fears --and raises awareness that options do exist -- to keep PALS personalites unlocked even in Gary's very advanced stage --
Our goal in doing the interview was to help educate the public that the technology currently exists , as well as to to help alleviate PALS fears of becoming locked - in.
Lisa

[Alffe]

I can't tell you how much I admire your attitude. What sharing your story has done is not only educational but inspiring. Thank you more than I can say.
And I can recognize a genuine smile when I see one!

[skimbrell2]

Lisa,

You still are the most amazing person!!! I have not been on in a couple of months and get on and find this!!! Gary looks Great!! You have a beautiful family and Gary looks like he is doing wonderful. Mom could still walk when she died but could not smile and Gary has such a big smile. This is such a crazy disease and affects everyone so differently.

I am so glad to see you and Gary still fighting so hard.

Love All of You

Sheila Kimbrell

[lisag]

Shelia,
So good to o hear from you -I think about you often .

You are right ALS is such a weird disease, it affects people in such a different order.

Gary has to actually fight smiling when he is in the process of typing. As his smiles can make him mistype.

He can smile after he types , but he has to use a solemn face and be relatively relaxed when typing .

Gary's face is the only place where he has dectable sgnals anymore. But we have 3 usable spots on his face , either cheek and the forehead. His left cheek seems to work the absolute best in his case.

However in some PALS , they have used it on the arms , inner thigh , etc. The place where the best signal is found varies person to person , as the disease progresses in different areas first in different people.

Gary is doing absolutely wonderful ,it has almost been a full year since he has been hospitalized with a pneumonia .( I'm knocking on wood fast after sayng that ) . Lisa