Hello good people in the virtual world. I have been invited to share with you my story. Sit back, relax, and enjoy. My name is Amy Diego. I am married to the most wonderful man and we have two fantastic kids, well, teenagers. Tug is 15 and Tallulah is 13. So much fun! Before they were born, I was a junior high English teacher. I loved it but left as I started having children. Now I was available to go on field trips and volunteer in my children’s classrooms. I could make Halloween costumes and bring snacks for the class. I just loved being home with my kids. I was inspired by all my childrens’ teachers and deeply believed in the philosophy of their school.
I eventually went back to school for my elementary credential and happy day, I got a job at my children’s school in a K/1 classroom. I was in heaven! I loved my littles, and I had a best friend in the teacher across the way. My daughter would eat lunch in my classroom with her friends. Did I have the best job or what? I loved it so much!
Eventually, I began to have some strange symptoms. My voice was affected first. I had slurred speech and I wasn’t even drunk. Ha ha. I also noticed that I couldn’t open my left hand as quickly as my right. After many, many doctor visits, I had my answer. It was ALS. I was just devastated, as was my family and friends!
My life, as I knew it, was over. The progression was pretty fast as I had bulbar ALS. My speech was the first to go, so I had to leave my oh-so-perfect job. I missed my littles a great deal. And the thought of the events I would miss in the future, Tug and Tallulah’s graduation, weddings, babies, came out of nowhere sometimes, leaving me in a sobbing heap.
Our community rallied around us, like a great big, cozy blanket. Our yoga studio held a fundraiser for us and the turnout filled our hearts to capacity. When a local walk for ALS was canceled due to Covid, a slew of friends and family members did a drive by our house. The line of cars went on forever. The love was magical. The music out the windows was infectious and the signs of support were a band aid for my heart. How did we get so lucky for this wonderful community to rescue us in such a beautiful way?
One particular visit to our team at UCSF provided me with the singular, most needed device. I have an Eyegaze Edge communication device. It has changed the way I look at my diagnosis. I no longer feel the despair of not being able to speak or connect with people. In a disease where I literally can’t do anything for myself, It’s a breeze of welcome independence.
On my Eyegaze Edge, I have a screen in front of me with a camera attached. The camera reads my eyes and adjusts the cursor to my eye gaze. It’s truly amazing. What can I do, you ask? Well, so many wonderful things. Let me tell you all the ways the Eyegaze device helps me.
It connects me to my community in that I can speak full sentences and convey my thoughts to my family and friends. The importance of this was never more apparent than a recent 17 day stay in the hospital. I had to rely on a cumbersome letter board and I could only spell brief needs. It was so frustrating not to be able to tell my hubby how wonderful he was or explain to a nurse exactly what was uncomfortable. I was overjoyed to return home to my gaze! Thank goodness for this amazing device!
I have internet access as well and boy, do I use it. Remember my cute , sweet littles? My students are a click away on Facebook and Instagram, well, their parents are anyway. I love to see the growth and funny things that they get up to. On Easter, I could see the fun egg hunters and the sweet family photos!
Also, I can wish everyone in my community happy birthday on Facebook. For this disease that keeps me from living life with my friends and family, it’s nice to get a glimpse into their happenings through technology.
Another formidable contender is the Amazon button. Remember the birthdays on Facebook? I am also able to send gifts to my family and friends. Normally, I loved to support our local businesses and I still do occasionally. Amazon is super easy and fast for me with the Eyegaze. The list of addresses in Amazon rivals any yard stick! I need nothing myself. I live in hospital gowns and I am in bed 24-7. Gone is any use for fun shoes. So I shop for others. When a friend is sick or has something to celebrate, off I go to Amazon! It’s fantastically fun!
Music has always been a community of inspiration for me. Every single memory I have is connected to a song. A few of my top favorites are Ani di Franco, Dave Matthews Band, Nick Cave, PJ Harvey, and Leonard Cohen. I was taking drum lessons for a few years before my diagnosis. It was incredibly fun. My favorite outings were all the concerts I went to with friends and family. I miss going to concerts, but the next best thing is watching them on YouTube. I can watch entire concerts on YouTube. I can also listen to my favorite bands on Spotify. I am only a click away to my favorite music. Once again, my Eyegaze device connects me with my community.
Being in bed 24/7 has its challenges. Like what am I going to do all Dang day? My Eyegaze has me covered. I have Netflix and Hulu at my fingertips, or rather, my eyes. I love to watch Gilmore girls with my daughter and Parks and Recreation with the family. Alone, my favorite are historical shows. Any Outlander fans out there? Team Jaime, for sure! I love to talk about everything Scottish with my friends. And it is interesting to see the colonists before the Revolutionary war. I get lost in the characters and the time just slips by.
I want the public to know about the fight against ALS because it’s important for an individual to know that people are around to support them. It’s important because the fight for ALS needs financial aid if we’re going to find a cure, many wallets make sure were headed in the right direction to find a cure.
I’d like to start by saying thank you. Thanks to our community of family and friends and even those we don’t know. Thank you for the donations, the meals, the rides for our kids, the visits. All of these things have been tremendously helpful. We are so blessed. And to my husband Dante, how did I get so lucky? I love you something fierce. Thanks for being the best freaking caregiver ever!
I test drove many eye tracking devices when I was diagnosed. It was a hard decision because I didn’t really need it at that point. I felt that the Eyegaze Edge communication device was the best fit for me. I used it occasionally and now, I use it 24/7. Eyegaze has the most knowledgeable staff and I have the most wonderful tech support just a text away. I can’t imagine my life without it. My disease keeps me pretty isolated, but through technology, I am just a blink away to a whole new world. My Eyegaze Edge device helps me see and communicate with my beautiful community.
