Updates from Huehue....

Gabriella has been in constant (weekly) communication with me via email reporting Mirna's progress, but I have not been able to post the information recently and I apologize for it.

Given that the seasons are changing in Guatemala (getting colder), Mirna was affected by the regular flu and hence was not able to practice as much as they wanted over the last few weeks since she was coughing, but as recent as last week, she has gotten much better and has been able to continue practicing with the system.

Gabriella reports that when she aids Mirna with her finger on the screen and asks her to move the mouse on that direction, Mirna seems to have much better control of the mouse. She has been using the keyboard and staggered speech applications and has been able to select certain phrases and letters at will, but they need to continue to work on controlling the mouse so that it does not move around as much. She also reported that they have spend about 30 dollars for rechargeable batteries for the system out of the money donated.

We all knew since the beginning that progress was going to be slow, but knowing Mirna, this progress would be steady and that she would never lose hope of using it to its fullest. We continue to pray for Mirna and her family and that they continue to work hard for Mirna's chance to communicate with all of us freely.

Mirna using the EE system.

God bless.

Updates from Huehue....

It's been a while since we have posted updates, but it does not mean that Mirna has stopped working on EE. On the contrary, she continues to work very hard every single day in order to take the most advantage of the system.

Gabriella has been sending us weekly updates on her progress, that while is still slow, it continues to be encouraging and motivational for Mirna and everybody around her. Over the last weeks she struggled a little bit on maintaining the mouse on a fixed location on the screen, but after some adjustments to the "radius" option on the EE system, based on Gabriella's reports, Mirna has been able to have much better control of this feature. Also, we have been told that she has been able to gain lot of control on both directions (horizontal/vertical) and that the electrode setting is the most time consuming activity.

Mirna continues to be very motivated by the system and has been practicing on using the keyboard application as well as the phrase application. She has not been able to fully control the system to begin typing phrases on her own, but she has been concentrated mostly on achieving a high degree of accuracy before the applications are put to full use.

Please continue to pray for her progress and at the same time, Mirna and her family continue to be thankful for having the opportunity to use this system and everybody involved in its development and its distribution.

May God bless you all for your constant support and interest on knowing about Mirna's progress.

Update from Huehuetenango...

I just got an update from Gabriella. She reported that Mirna continues to improve with her accuracy on moving and controlling the mouse and that she has even been able to select letters from the application keyboard. She has been able to type the word "Gracias" which means "Thanks" in Spanish and it is obvious to realize how appreciative she is to have the opportunity to communicate. Gabriella also reported that Mirna is following a very strict schedule where she has her physical therapy in the morning and then she has 2 hours of practice with the EE system in the afternoon. This will enable her to continue to make great progress and very soon, be able to use the system to begin typing short sentences and messages. She will also continue to work on her accuracy to be able to take advantage of the "phrase" input provided by the modified Staggered Speech application.

I also heard from my friend Julio, who jointly with my Dad delivered the backup set of electrodes and he reported that he continues to be amazed of Mirna's progress and how much control she now has of the system.

I would like to mention that Dr. Gips from Boston College has donated the set of electrodes to Mirna's cause and hence the $200 will be kept to be used for any other need that Mirna's family has in terms of obtaining materials from the United States.

Finally, I would like to mention that Mirna's story has been featured on Boston College's EE website (http://www.eagleeyes.org) and that her story will also be featured on OFOAs upcoming newsletter. (http://www.ofoa.net)

Thank you for keeping your prayers for Mirna's progress and it is obvious that these prayers are being heard.

God Bless!!

Time to head back...and say Goodbye.

The "Cuchumatanes" mountains on the background and the ruins of buildings of the Maya descendants called the "Mam" in the ancient city of Zaculeu, Huehuetenango.

Last Friday was our last day in Huehuetenango and our last day with Mirna. We got together for the last time to check for any other concerns that they may had with the system and to get one last report from the week before. As expected, Mirna had continued to work on the exercises as suggested (mouse movement and control only) and she continued to get better and better every day. Gabriella mentioned that she now has much more control, specially when trying to leave the mouse stationary (key in order to be able to select and click). They also said that the vertical location of the electrodes continued to be the most difficult part of setting the system up and being able to find the best and optimized settings for Mirna to begin her exercises and take the most advantage of the system. We also contacted Ms. Debbie Inkely at OFOA in order to purchase an additional set of electrodes (US$200.00) to keep them as a spare set. Without the electrodes the system is useless and if something were to happen to the existing set, Mirna would not have to wait a long period of time to keep using the system. Finally, Gabriella also reported that Mirna is very excited to use the system and sometimes it is obvious that her eyes are tired, so they have to ask her to stop. This proves Mirna's will to go on and begin using the system to its fullest in order to begin communicating with her family and friends as we all have prayed.

After a few setting reviews, it was time to say goodbye to Mirna and her family. This was a very emotional event as expected, and based on Mirna's very limited facial expressions, it was obvious that we were all upset, but at the same time, very satisfied with all the progress achieved in just a few weeks. In order to avoid getting too emotional and getting Mirna in an uncomfortable state, we said our goodbyes and gave Mirna a big hug and kiss. We then turned to Mirna's mother and on behalf of all the people that had contributed to this cause, we presented her with the remaining balance of the money collected (US$520) and asked her to use it appropriately (as we all know she will). Mrs Ramos (Mirna's mother), also named Mirna, was very thankful and wishes everybody many blessings from God and that your contributions and generosity are given back ten fold.

We all know this is just the beginning of a journey together and that with love, patience and effort, we will see even greater results from our friend Mirna Ramos. She is a fighter and we all pray that with very hard work, one day she will be able to post a little note on this blog to express her emotions and feelings towards all of you that have blessed us all with your generosity and make this endeavor a reality.

Below is a picture of our beautiful little town in the western mountains of Guatemala called Huehuetenango, where a person called Mirna, continues to see life as a chance to make a difference in all of us by showing us that anything is possible with motivation, discipline and hard work.

May the Lord bless you all and please keep checking this blog for more news from Mirna and her progress.

Monday's progress and pictures

Today was another productive day. After hearing great news from last week, we met with Mirna, her sister and her physical therapist (Olga) this afternoon to review her progress and also to address some concerns presented by Gabriella in terms of horizontal movement and settings.

We met in the afternoon and after a quick greeting, we began with the exercises. It was amazing to see how much control Mirna now has on the horizontal direction and how she has been able to gain much more control of the mouse. We have found the ideal settings in terms of gain and damping and we will continue to use those settings in all sessions. The only problem was presented when we asked her to move the mouse on the vertical direction since we would not detect any signals coming to the EE system. We did everything we could including repositioning the electrodes, applying more conductive gel, cleaning the contact areas from any moisture, testing the electrodes on another person (Julio), etc, but we could not see much more movement on the LEDs on the system. For a moment it was a little bit frustrating, but only to us, since we could not see any sign of frustration on Mirna's part (shows how patient she is compared to the rest of us). We even contacted Doctor Gips at Boston College for assistance, but while waiting for his response, we decided to test the right eye (she has been using the left eye since according to Gabriella, it is the one where Mirna has much more control) and immediately when we did this, she gained full control of the system again. It was very encouraging to see her moving the mouse in all directions (see video) and we were all, once again, having a great time with Mirna. We also adjusted her wheelchair to be in a straight line with the monitor given that she is only able to incline it to a fixed degree.

We asked for permission to take pictures (even a video) and her family accepted without any concern and said that they would want others to be motivated by Mirna's story and have no problems sharing the pictures.


We will reconvene on Wednesday to begin using the software application and in order for Mirna to gain more accurate control of the system. We will move into a more stringent schedule this week while monitoring her diligently to avoid exhaustion.

Please meet Mirna Ramos, her sister Gabriella (left), my friend Julio (right) and yours truly (center).

Mirna using the Eagles Eyes System

Gabriella Ramos and Mirna Ramos

The final setup (Laptop, monitor, EE system, mouse and UPS)

We will have some pictures of our beautiful Huehuetenango in our next post.

Mirna using the EE system Video (right to left and up and down)

God bless.

Progress Update

Throughout last week, Mirna continues to use the system and continues to make progress. Gabriella continues to adjust the settings (gain, damping, etc) in order to find the best values for Mirna's comfort and ease of use. As mentioned on the last post, we detected some potential issues and have contacted Dr. Gips at Boston College for assistance to which he has already contacted us back with suggestions. We will try these suggestions this afternoon as we will try to perform the last set of tests and adjustments before we head back to the states.

My brother Carlos, my friend Julio and others will continue to provide assistance to both Gabriella, her mom and Mirna in order to continue with the training sessions for the following weeks.

The Staggered Speech has been updated (David Karim) for customization and we will work with Gabriella to enter the most commonly used phrases for Mirna's ease of communicating. With the additions, she will be able to type phrases and even sentences with less number of "clicks". AT&Ts text to voice implementation continues to work perfectly and will provide a way for Mirna to "speak out" what she has typed. This will allow Gabriella and her mom to "take a break" and allow Mirna to call for their attention when needed. We have shared this modified version of the program with Boston College so that others can also benefit from the phrase input implementation.

Many friends of Mirna that have learned about this endeavor have requested that we continue to thank each and everybody that has contributed in any way to this cause. They understand the value of being able to provide Mirna a new way of communicating with others and everything that you have done to allow for this to happen and for this, they send their thanks and ask the Lord for his blessings to you all.

First Test

I apologize for not being able to post anything on Monday as promised, but we lost internet access over the last 2 days.

As planned, we visited Mirna on Monday. We took the entire system over to her house and we were able to see Mirna for the first time (at least Julio and I). We had both prepared for this moment and were counting on each other and on God's support to handle the situation appropriately. In the beginning, it was shocking to see Mirna since we still remembered her the way she was before the incident, but we were able to handle the situation very well right after we both hugged her and kissed her on the forehead and we could see that there was a lot of emotion on both ends. In order to avoid getting too emotional, both my brother Carlos, my friend Julio and I quickly began talking to her about the story about getting her the system (we talked about OFOA, ADTRAN people and more) and we were able to get to a level where we were all comfortable talking to her and seeing her.

Mirna's family (her mom and sister) are immensely grateful towards all the people that have contributed to this cause and asked us to share their gratefulness with you via this blog.

After the initial explanation of the system to Mirna (she was saying Yes or No by blinking or raising her eyes), we proceeded to hook her up. We had to make some minor adjustments in the beginning, but everything regarding the hook up of the system was pretty straight forward and we felt good about Gabriella's (Mirna's sister) confidence about setting it up and using it. We then explained to Mirna the first steps on how to control the mouse and we asked her to move the mouse from right to left only. We also warned her that we all needed to be very patient and that a lot of practice would be needed to master the system.

Once we turned the system on and once we gave her control of the mouse, Mirna took over with so much ease that we were all simply amazed. We made minor modifications to the gain and damping settings, but we were all amazed on how easy she picked it up and how she was controlling the mouse (at least on the horizontal direction). Thinking it over after, we could have not expected anything less from Mirna since she has always been a fighter and a very dedicated, driven and motivated person.

She was following directions to the dot and she only had some issues on keeping the mouse steady on a fixed location, but that is expected. We kept doing this exercise for a while, giving her the necessary breaks, but when we would asked her to see if she wanted to stop, she would blink saying NO....she really wanted to go on. We were all by then having a great time, seeing her making amazing progress in just a few hours.

We then moved into the Horizontal control (which is supposed to be harder) and we had some issues with the electrodes, gel and location, but after some tweaking, we were able to get some signals into the EE (eagle eyes system). Since she was in a wheelchair that reclines, we could not get a straight position and we decided to move the monitor to a higher location on the desk. Once we did this, she was able to move the mouse up and down better. It was a little bit more difficult, but she still did a great job given the circumstances.

We can see and based on Gabriella's assessment, Mirna is very excited about the system since she understands how much it will help her to communicate. We have left the system in her house and Gabriella will perform another couple of tests through the week and we will reconvene on Friday to check for any improvements.

All in all, it was a great day of hope and achievement with Mirna. We all continue to be hopeful that she will take full advantage of the system and will be communicating with all of us soon in a much efficient way. We have obtained permission from her family to take pictures of Mirna using the system, so we will post them as soon as we get them.

Thanks to all for praying for her!!.

God bless.

Ready for the first test with Mirna

This past Friday we did the last preliminary test with Mirna's sister. It was a great session since we were able to find details and create a process to set everything up and also to find the best settings (damping, gain, etc) for the user including how to find the best position for the electrodes. We also completed installing all the components in the mobile desk including the laptop, the monitor, the UPS and the mouse and everything fit perfectly (we will post a pic on the next blog). We also got the last version of the Staggered Speech program which now has more "phrase" input buttons and it is completely customizable. Thanks to David Karim for supporting the customization of the program which source code was kindly provided by Doctor Gips from Boston College.

Gabriella feels more comfortable with the entire system and feels she is ready so we have agreed to bring the system to their house this Monday afternoon (hopefully the rain will stop) and introduce the system to Mirna.

We are all very excited and at the same time, we feel nervous and anxious since we (my Friend Julio and I) have not seen Mirna in this condition before. We feel that God will be there with us and we feel all the prayers from everybody following this story, so we should be fine.

Wish us luck today and I hope to come back next time with good news on Mirna's response to the system.

God Bless!!

First Test Trial and Plans for Next Week

On Wednesday we tested the system locally with the help of Gabriella (Mirna's sister), my brother Carlos, my friend Julio and my wife Sandra at my house. The purpose was to introduce the system to Gabriella, and my brother and friend who will also be assisting when I return to the U.S. I gave them a brief introduction of the system, the theory behind it, configuration and setup. We then proceeded on hooking Gabriella up and let her use the system.

Gabriella said that it was difficult at first, but once we made sure her head was completely stationary (we noticed that people without any handicap condition would tend to move their head involuntarily) she was able to move the mouse from left to right and back. It took a lot of concentration from her part and it made her realize how much effort and patience will have to be devoted to make the system fully useful for Mirna. We then used my brother as a patient and allowed Gabriella to set the system up on her own and along the way we noticed some improvements in the process of hooking the patient up to the wires.

Gabriella mentioned to us that Mirna is aware of our plans and seems to be very excited. Mirna has always been a fighter and a very disciplined individual, so we all believe that she will show a lot of progress once we perform the first session.

Today, we will set the system up on a modified computer desk (donated kindly by my friend Julio Lucas and family) where a UPS (Uninterrupted Power Supply) would be installed to protect all the system parts (laptop, monitor and EagleEyes) along with a mouse and other miscelaneous pieces to make the structure solid and easy to use and move.

Today, we spent $40.00 in the UPS, US$10 on the wireless mouse and $3 more on miscelaneous parts such as VELCRO to hold the EagleEyes system in place.

We have plans to perform one last session with Gabriella so she is completely confortable on using it and we will try to take the structure and system to Mirna's house over the weekend and begin the first session on Monday.

Please keep your prayers going so that Mirna responds well to the system.

God Bless!!

In Huehuetenango, Guatemala.....

We made it safe and sound into Guatemala and then into Huehuetenango (Mirna's home place). We will be meeting with her sister Gabriella tomorrow afternoon to go over the basics of the system along with a brief description of Mirna's current living space. This last detail will allow us to build a metal frame that will hold the system (monitor, laptop, eagle eyes, etc) in a way that it will have ease of movement and is lightweight for any person to move and use.

As mentioned above, we will also go over the basics of the system and will do a few trial runs so that Gabriella can get used to setting the patient up, calibrating the system, using it and then disconnecting the user.

The plans call for us to have an initial trial run with Mirna as early as towards the end of this week (Friday or Saturday) if our current activities go well. We will continue to post this blog in order to provide more accurate information once we begin the actual sessions.

God bless!!

Getting ready for the trip to Guatemala

We are getting ready to go to Guatemala on Tuesday and then to Huehuetenango, on Sunday, July 5th. Last week we tested the Eagle Eyes System and everything seems to be in working order and we also have the Staggered Speech program customized for Spanish phrase input.

During our testing with the system, and while trying to simulate a person with no motor skills and only eye control, we realized how difficult it is to communicate with others, even when using the system. We also realized that it will take time for Mirna to get used to using the system and begin taking full advantage of it in order to communicate with her family and friends. We will all have to be patient and hopeful to see positive results and encourage Mirna as well to keep trying.

We continue to thank everybody in ADTRAN that provided their support for this cause and we know they will be blessed many times over for their generosity.

Below is a quick summary of the funds collected and how the money has been used:

-Total Collected: US$2,066

-Donation made to OFOA for the Eagle Eyes System on behalf of ADTRAN employees: US$1,200

-Electrode Spectra Gel (6 pack): US$33.99

-Surgical Tape to hold electrodes in place (12 pack): US$25.43

- AT&T Voices (Spanish): US$40.00

-Total Used Up to Date: US$1299.42

Balance: US$766.58

**Another $45 came in on 6/29 totalling US$811.45

We will continue to update this blog in order to post how the remaining balance will be used to help Mirna's family with day to day expenses and also to assist setting up the working area for her and the system.

Once again, may God bless you all for your support and keep Mirna in your prayers so that she will take full advantage of the system.

Testing the Eagle Eyes System

This past week we received the Eagle Eyes systems from OFOA and we also received more donations from more generous ADTRAN employees totaling up to $1730.

We will be testing the system over the weekend to make sure everything is in place and making sure we are able to configure it for Mirna's needs in Guatemala. We are also almost finished with the modified (in Spanish and with Phrase input) StaggeredSpeech program for Mirna to be able to type phrases instead of just letters.

On the next post we will have detailed accounting on how the funds have been spent up to date.

Once again, thanks to everybody that has contributed to this effort and in the next weeks we should be able to begin using the system with Mirna and post how she is progressing and responding.

Mirna's Story

In 2005, Mirna Maria Guadalupe Ramos, who currently resides in Huehuetenango, Guatemala suffered a devastating stroke during what would have been a routine medical procedure. As a result, her cerebral cortex was damaged making her completely paraplegic and lacking any motor skills. Since that time, she has been completely paralyzed and is only able to move her eyes. A group of friends had been looking for any means and ways in which they might be able to improve her life condition, even if it was just marginally. As a result, they discovered a non-profit organization that has developed a tool called “Eagle Eyes” (http://www.eagleeyes.org/) that allows people with serious handicaps and physical limitations to move a computer mouse with the simple movement of their eyes or other facial expressions.

The organization is called “The Opportunity Foundation of America”
(http://www.ofoa.net/Default.aspx) and they are associated with Boston College, who jointly developed the system.

During the month of June, a collection was conducted in ADTRAN , in Huntsville, Alabama, with overwhelming response allowing them to purchase/donate the cost of the system ($1,200) and more. So far a total of $1,573 has been collected, plus a laptop and a flat screen monitor.

This summer, they will be travelling to Guatemala and they will be setting the system up and train her family on how to use it. They are convinced that this will represent a huge improvement in the quality of her life since it would allow her to express her needs and perhaps most importantly, her emotions. It would likewise help to relieve her family of a great burden on trying to interpret what she is trying to say. The doctors tell us that she is fully conscious and can hear and smell and see, however she has been inside a physical prison ever since that faithful day back in 2005 and is not able to communicate in any way with her family. Now, she will have a chance to say a simple "hello" back, and it will be incredible for both her and all of us that know and love her.

Due to Guatemala's macroeconomic situation and her family financial situation, a system like this would be simply out of reach for a middle class family for Guatemalan standards and therefore would not be affordable without the help of organizations such as OFOA, Boston College and the people of ADTRAN.

We will be updating this blog as often as possible to keep you posted on her progress and we will also be updating the way the funds are being utilized.

May God bless you all!