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Returning to my roots

Returning to my roots

by | My roots

I’m launching an online fundraising campaign. I’ve been longing for many years to go back to my hometown in Mexico, but I haven’t seen the way, the possibility, to make it happen. I was so ashamed of myself and couldn’t dare to leave the country like this. That would never happen, “I would rather die in foreign lands”, I used to think. I remember when I was a new arrival here at the nursing home; I was thinking about going back, but that was just a flash in the pan. I thought, “Don’t be stupid, you are just going to make people feel pity for you.” I couldn’t do that, my pride was too great! Probably, the type of pride nobody wants to have, but they don’t realize that’s already what they’ve got. Which is unfortunate, because you can’t see beyond your own nose, and think clearly. 

I’m older now, and many new things have happened to me—many people, GOOD PEOPLE! God has brought them into my life and helped me in many ways. They changed my way of thinking, how I see things, and even helped me become smarter. I don’t think as poorly anymore. I believe anything is possible, and I can return to my hometown now. I learned that there’s no greater obstacle than yourself. 

Moreover, I wish to be an elderly man over there. So I’d better hurry and get going soon, because I’m not too young now. 

How I Control The Robot Arm

How I Control The Robot Arm

by | Robotics

How I Control The Robot Arm

After almost three years of training with the dot and exoskeleton, we started training with a robotic arm in a virtual environment for some time. Then, we transitioned to the real thing I always wanted: a real robot arm. That was the main reason I entered the clinical trial. The speech decoding was very cool, but the robot arm was more appealing to my ears.

I always wished to be able to do my things, feed, drink, and do basic stuff for myself, and so I saw the opportunity with the robot arm coming my way.

It was AMAZING! I started doing basic tasks, reaching out, to see how well my control was, with five, I don’t know how to define it, imaginary /attempted movements, let’s stick with that. I have been saying “imagine” gestures, but I move my nerves behind the scenes.

The robot arm can be used in different ways. It can move straightforwardly, like when someone straightens their arm. It can also go into a downward and lateral position and be rotated accordingly.

  • To go to the right side. I attempt to move my right thumb.
  • To go to the left side. I attempt to move my left thumb.
  • To go backward, I attempt to move my head back and forth.
  • I attempt to squeeze/tighten my left leg muscle to go forward.
  • To go upwards, I attempt to move my lips.
  • To go downwards, I attempt to move my tongue.

Making the transition means entering rotation and grasping mode. I have to try to wiggle my two middle fingers simultaneously. When the switch happens, you can see the big screen, where a rectangular shape is drawn. It switches from red to blue. The red color means it can move, and the blue color means it can rotate and grab objects.

  • To rotate clockwise, I attempt to squeeze/tighten the muscles in my left leg.
  • To rotate counter-clockwise, I attempt to move my head
  • To move forward toward an object while in the switch mode, I attempt to move my tongue
  • To move away from an object while in the switch mode, I attempt to move my lips.
  • I attempt to move my right thumb to close the fingers and grab the object while in the switch state.
  • To open the fingers and release the object, I attempt to move my left thumb while in the switch state.

The same steps apply to taking this in a lateral position, although it is slightly different. It doesn’t rotate, but it bends. Imagine bending your hand at the elbow. Well, the robot arm does, sort of, like that. It turns like a curve, just like bending your elbow.

  • To bend it towards me while on the switch state, I attempt to squeeze/tighten my left leg muscles
  • I attempt to move my head to bend it away from me while in the switch state.
  • To go forward toward the object while in the switch state, I attempt to move my tongue.
  • To move away from the object while in the switch state, I attempt to move my lips.
  • I attempt to move my right thumb to close the fingers and grab the object while in the switch state.
  • To open the fingers and release the object, I attempt to move my left thumb while in the switch state.

Exoeskeleton

Exoeskeleton

by | Robotics

Exoeskeleton

I’ve been a little too busy doing other things and haven’t updated my website for several months now; that’s terrible!

I will start by introducing my robotic arm—well, not mine. It’s the robot I work with the clinical trial team at the office. It’s pretty incredible! Let me go back to the beginning.

When we first started, it wasn’t anything physical or something that looked even close to a robot arm. It was just a “dot” on the screen, a big monitor with a dot floating around it, that was all!   Well, I only had to control the dot with my imagination. I thought it would be a piece of cake, my goodness! It was hard as heck! It took numerous attempts, but we did it, thank God! I managed to make it work as intended.

Such a dot represented a computer’s cursor, so I played with it, moving it around the screen. I started with four basic, imaginative movements: I moved my head left to make it move to the left. I moved my head to the right to make it move to the right, and I moved my arm up and down to make it move up and down.

I did not keep any of those videos to show you, sorry! 

After training with the dot control for some time, we moved on to a different project. It was called a planar robotic manipulandum for upper limb assessment and movement assistance. It was a device on a table with a crystal clear plastic base full of cables and electronics. The device connected to my arm at the wrist, and I could move it through a horizontal workspace while measuring the applied forces. They also had an assistive glove called the exoskeleton that assisted with opening and closing my fingers.

I did keep videos of the Planar Table and Exoskeleton. 

Then, we went back to play with cursor control but tried different imaging techniques. Sometimes, I felt a little silly, but I tried to do everything I was told. I was trying to move my left thumb to go left, my right thumb to right, my head upwards to go upwards, and my toes downward. As time passed, we learned a lot of new stuff and strategies.

Empowering Journeys: Milestones | Celebrations | Challenges

Empowering Journeys: Milestones | Celebrations | Challenges

by | Chapter 4 & beyond

Empowering Journeys: Milestones | Celebrations | Challenges

It was 2021, and new and exciting things have unfolded since then. Both the Speech Decoding and Robotics teams revealed exceptional and highly successful work. July emerged as a pivotal month, as the speech researchers aimed to unveil their findings in a prestigious publication, The New York Times. July 15th was the target release date, and I found myself in the spotlight, engaging in an interview with the esteemed journalist Pam Belluck. 

Accompanying this was an engaging photoshoot by photographer Mike Chen, who later became a close friend of mine. When the article finally graced the pages, the researchers and I were very excited, or as they usually say, “STOKED.”  Witnessing my involvement in documented history and possibly reaching a global audience felt surreal.

Just eight days after the publication, I celebrated my birthday surrounded by family, friends, and almost all the clinical trial researchers. Dr. Adelyn Tu-Chan marked the occasion with a heartfelt FaceTime call, extending birthday wishes and revealing a message from an individual who works at UCSF, whom I soon discovered was Dr. Clarissa Kripke. Moments later, Pam Belluck, the reporter, FaceTimed me too, serenading me with birthday greetings in Spanish, French, and Mandarin—a delightful moment!

image of the New York times

Dr. Clarissa Kripke was the Vice Chair of CommunicationFIRST, an organization dedicated to protecting and advancing the rights of individuals with speech-related disabilities through public education and systemic advocacy.

They wanted my presence on the board of directors, a proposition that stirred conflicting emotions within me because of my work background. Uncertain of my qualifications and the impact I could make, I hesitantly agreed to join this noble cause. However, before I could be officially on the nonprofit, I still had to be voted in by all the board members then in office. The pivotal voting day arrived on November 19th, 2021, and with resounding support from the board members, I proudly became a member of CommunicationFIRST. The initial board meetings were daunting, but as time passed, I adapted and became more accustomed to them. 

In March 2022, we celebrated the third anniversary of the clinical trial that marked the beginning of this transformative journey. Gathering at the Plaza downtown, amidst the chilly weather, we commemorated the significant milestones achieved thus far.

However, as we rode the wave of progress, life took an unforeseen turn. In April 2022, a COVID-19 outbreak shook the nursing home community, affecting numerous residents, including my roommate. Naively thinking I had escaped the clutches of the virus, I received the unfortunate news of my positive test result on April 6th. I was temporarily moved to a different room and isolated; I couldn’t go out. So I took it as a real vacation and slept in all day, not getting out of bed. It wasn’t because of feeling bad or ill, noooo! COVID was good to me and didn’t treat me as badly. 

I was out of quarantine and returned to my original room on April 14th or 15th. I was thrilled to return to normal and be able to go out again. Although I wasn’t feeling ill while being isolated, I was exhausted from being in quarantine.

The months flew by, and before I knew it, my birthday had once again crept up on me. July 23, 2022, that year was the big 4-0! As always, it was time to gather all the people I hold dear for a grand celebration filled with laughter, joy, and cherished memories. As usual, we celebrated at the Plaza. I find it hard to believe I’m getting that old already; getting old is great, don’t take me wrong, I feel strange. Anyway, we had a wonderful, fun time together, and I just had a brand-new GoPro video camera to film the beginning of a new chapter in my life. 

The following month, on Wednesday, August 24, 2022. I was heading to the office, where we do the recording sessions; I was going to test with the robotics team, who were supposed to record that day. It was an early, fresh, sunny morning when an unexpected incident shook my routine. While navigating my power wheelchair along the sidewalk, a misstep led to a fall onto the street. The impact of the unforgiving cement left me drifting into unconsciousness. When my senses gradually returned, I found myself in the emergency room. The girls, who were waiting for me at the office, were standing there by my side, making sure I was okay. My sister was also there; she got a tremendous scare, fortunately, just a scare. 

That was the first time I fell off the sidewalk. I had a few other mishaps, but nothing major, just some close encounters with the bushes 😂, and got stuck in the mud. I was accompanied by the fire department back to the nursing home a few times, as well. It wasn’t because I was in trouble, ok, that too, but because I couldn’t communicate with them. Nonetheless, I never went down and felt the concrete. Anyway, the researchers stopped recording for about a week, as they wanted to ensure I was fully recovered from the fall.

Between board meetings and working with the clinical trial team, we reached 2023 without any new developments. As the year began, the researchers also started recording on January 11th. In the meantime, the robotics team would come up on Wednesdays and Fridays, and the Speech team would come up only on Thursdays. Some researchers, sadly, were leaving the team soon, so they were trying to find replacements. 

Dr. Clarissa Kripke stepped down as the Vice Chair of the organization. On April 21, I was honored to be elected as her replacement and to serve as the new Vice Chair.  

July 23rd was upon us already; it was my birthday, another year on my head. I celebrated at my sister’s and her family’s house. Thank you, sister and brother-in-law, for letting me celebrate it at your place this year!

We were a smaller group of people this year, but the enjoyment was very much the same, joyfully!

I summarized the most important events that have occurred since 2021. I have grown a lot, both personally and professionally, and I have also gotten bigger 😂 I tried not to, but it’s hard, I love to eat, sorry, I derailed myself from the subject. Anyway, from the milestones, groundbreaking research, celebrations, joining the organization, CommunicationFIRST, and being in quarantine. My life has been busy, which I love. It is great to be able to do so many things, even with my disabilities.

My First Power Wheelchair | Part 2

My First Power Wheelchair | Part 2

by | Chapter 3

My First Power Wheelchair | Part 2

On the first day, I was officially approved to go out on my own. I remember I went to the Farmers Market. There’s a little farmer’s market in downtown Sonoma, every Tuesday afternoon, from May to September. So I went over there to have a nice and fun time, and for me, it was extra FUN!

Farmers market downtown Sonoma

I still had the same problem, as in the beginning, when I was driving my mobile chair. My hand wasn’t getting any better at maneuvering the joystick, so I needed to figure out a solution. I used to go to church every Sunday. Well, whenever I got brave enough to get to the other side of the road. It was December, the most important month of the year for me! I was going to Las Mañanitas of the Virgin Mary of Guadalupe, around 4 am. The morning was so cold, so I wore a very thick jacket to keep myself warm. I was very comfy, and the jacket worked perfectly, but it blocked my reach to the joystick, which made it harder, I was thinking, oh jeez! I am going to have, if possible, EVEN more difficulties driving and getting to mass on time. I was mistaken! I was having trouble, at first, trying to get to the joystick. Suddenly, when I was trying to reach out for the joystick, I hit it with the thick sleeve of my jacket, and the wheelchair was beautifully going forward. A big smile was drawn on my face. I have spontaneous laughter, it comes out of nowhere, for no reason. Fortunately, the streets are deserted during the early morning hours, so I was like a demented person, laughing, by myself to church. Right after that moment, a big idea came to my mind, and a new way to drive, my motorized wheelchair, was born. I thought to wrap around my wrist, a rag, or a towel, and wear it like a bracelet, something thick enough that allows me to drive with my wrist. I tried a few different things until I got it right. Now, I wear a sock filled with stuff, around my wrist, to drive my power chair ever since.

2018 arrived, and two new, major, things happened. First, I started the process of getting a new power chair. I hit the one I had somewhere on the street very hard. It damaged the bar underneath that holds the wheels and it was irreparable. Second, I was enrolled in a clinical trial during the same year led by the University of California, San Francisco. I was so excited to be able to participate in the clinical study, it was a silver lining for me! The research was going to be about two, different, medical studies; helping paralyzed people control a computer’s cursor/mouse and a robotic arm; and trying to make a person speak through a computer interface with their thoughts.

It was super exciting to hear about such a phenomenon! I was required to have surgery on the head, so they could implant a thing called, ECoG, or a Microchip, in the surface of my brain. The Microchip was going to allow the researchers to connect me to a computer system, so they could study my brain.

The year 2019 began, and I was still waiting for the insurance’s approval for my next power chair. In the meantime, I was due to have surgery for the clinical trial. On February 25, early in the morning, I was in the operating room getting the implant done. It went well, I wasn’t in severe pain, or feeling any different from what I used to feel. Everything was very successful, in my opinion.

We started recording on March 8th, at the nursing home where I live. The people, conducting the clinical study, arranged with the nursing home to keep me in a room by myself. It was a room with two beds, so they had to pay for the extra bed. At first, the researchers were coming every day; two days the Robotics team, three days, the Speech Decoding team, and vice versa. Sometimes, even the doctors came, they wanted to make sure the incision was healing well.

In June, the sister of the man from the wheelchair company reached out and said, the new power chair was ready to be delivered. Really? Yes, she replied, when do you want me to come in and bring it to you? OMG! I was so excited, even though I still had the older one. Yes, it was jumping badly when running, but the motor was in great condition. I could keep it if I wanted to, but it wasn’t nice, because it could get rotten, while somebody else could use it. We set up a date for her to come to my place and bring my new mobility.

June 13th was the day we chose. I had a session with the Robotics team that day, but we finished earlier for that reason. The researchers were heading out when the woman was arriving with my chair. I fell in love, immediately, my new substitute legs were so beautiful 🤩 I love it! It was, basically, the same way as the other one, same settings, and performing the same tasks. My older wheelchair can recline back, adjust the footrests and tilt up the whole chair, beautifully, you could take a good nap and rest the back, right there. It is perfect for me because I spend the entire day on the chair, and I’m not a man of steel, I get tired too. My new one has that too, but with one big upgrade, it came with lights for when going out at night.

Let me tell you something about the motorized chair having lights. I requested the wheelchair with lights and a seat elevator, but the insurance didn’t approve any of that, nor the seat elevator or lights. I was going to get nothing but the motorized wheelchair, just like the other one, only in different colors. I got headlights on it, because someone, out there, with a big heart, donated them to me, bless his/her heart! During that very month, I was able to donate my first power chair, as well. A friend from Mexico had a family member who needed a power chair, so she took it from me. I was happy about it because I knew the chair wasn’t going to be wasted. Meanwhile, the clinical trial people were trying to find a different place to do the recordings. The nursing home was too expensive and not ideal, too much going on. We continued with the recordings for a couple of months more, at my place. Then, we transferred to a medical building, ten minutes away, and do our sessions there. Everything worked out well, a new place where to do the recordings, and new hot wheels for me to get there and around.