March 2023
by CJ Rodriguez

My name is CJ Rodriguez and I have ALS- I was diagnosed September 2022 and estimated my symptoms began in 2020. I am 46 years young. I have 3 beautiful children at all stages. Son, 25. Daughter, 14. Son, 7. I have lived all over the State of Texas; East Texas, San Antonio, Texas. Dallas, Texas, and The Coastal Bend of Texas.

I grew up in San Antonio, Texas. Growing up I was very healthy and very active. I loved sports and was good at them. Specifically, Baseball. I played Baseball year-round from little league to select ball and into high school. 

During high school I became an electrician; then moved into the auto-mechanic industry. I have been a heavy line diesel engine technician for over 20 years.

I explain my work history because it’s very difficult to put into perspective on how ALS truly affects the human body. 

I wasn’t born weak; I was healthy.

I didn’t injure myself to create immobility; I’m strong.

My body has been working and staying in meant physical conditions meeting extreme physical demands daily from the time I could run until in an instant- it stopped.

It didn’t just stop though. My body in just months made my thumb stop moving.

And that’s where my diagnosis began. I decided to get my thumb checked out and fixed so that I may return to opening my own mobile mechanic business. Thinking I must have pulled a ligament or have a ridiculous case of carpal tunnel…. I was never ready to hear what I would be told in a few short months from this appointment.

Considering the articles I have read; my diagnosis came very fast. Between the right referrals and my wife staying on top of communication. I was diagnosed in 5 months. 1 PCP, 1 Ortho Specialist, 3 EMGs, 2 neurologists .

Upon diagnosis, my wife was able to get me approved for disability and find lots of resources for our family. 

While searching; my sister recommended looking at Team Gleason.

We found Steve and Michel’s story and watched their documentary. We also found their voice banking program and signed up.

The process of approval was so fast and easy.

Shortly after applying for voice banking, my parents decided to do something extraordinary! They wanted me to be able to take my family anywhere we wanted to go. They set up a “Vacation Fund” for me to take my family anywhere we chose to go.

We started looking at going to Disney! We’ve always wanted to go, but never had the opportunity. Now more than ever I wanted to take my kids while I am still able to walk and have most of my mobility.

Ultimately, Disney was very expensive and if we are going to do Disney, we must see everything.

That’s when I looked back at Team Gleason and what else their organization does. That’s when I found Team Gleason’s Adventures! I decided to apply for the Adventure and see what could happen. 

Once again, Team Gleason’s process was so simple and easy! Right after Christmas we got the call that our request for an Adventure to Disney was approved for March! That’s right!! We are going to Disney and not just “Disney” no! We are going to all 4 parks at Disney! Team Gleason stepped in and showed all the way out with 4 TICKETS to Disney and 5 nights in Orlando, Florida! 

We took this opportunity that Team Gleason gave us to turn this Adventure into everything we possibly could!

We took two weeks, hit 16 states, 6 destinations, and I drove all 4600 miles!

Now we are off in style, driving my brother’s Red Challenger nationwide!

First Stop- My sister’s in Dallas for my ALS Clinic appointment. Everyone on my team was so excited to hear about our Adventure and was also thrilled to hear that Team Gleason helps with these.

I am so lucky to have such a support system for myself and my family with my sister and brother in-love living so close to my ALS Clinic. It really makes the trips easy, and our family looks forward to family time with their Aunt and Uncle. It’s our home away from home. 

It’s Friday, my appointment went awesome! Now it’s time for some fun! 

So Eager and Excited we stopped at every state line and took pictures! Louisiana, Mississippi; and then our eagerness went into getting there!

Onto our 1st Stop! Orlando, Florida!! We made it all the way to Pensacola, Florida before calling it a night.   

With any Adventure comes chaos! We find a cheap hotel and decide okay, we can crash here…. My wife goes in, checks in, and off we go to the room…. Sketch is my wife’s favorite place and this one did not disappoint! We grabbed our “Needed” luggage and headed up.

Opened our room and to our surprise the room had no electricity. It was in renovation; but that was a blessing! On our way down and out we are noticing our surroundings and realize we are most definitely in a sketchy place. We heard banging and to our next surprise 2 police officers were knocking on doors.

We are running away at this point laughing and shaking our heads… we get a refund and move on to the next town. 

Saturday came so fast, and we now realize we have entered the time multiverse and lost an hour. Saturday evening, we made it to Orlando just in time for dinner with my uncle who flew in to join us at Disney. I was so excited he was able to join us and what a great experience my kids got to share with their Great Uncle as well. 

Have I mentioned my incredible supportive family? They really are the best. 

My wife was able to get me a DAS pass at Disney which is like a fast pass, minus very few perks. In other words, Disney caters to people with disabilities and makes it possible to enjoy Disney without the exhaustion from waiting in lines.

Disney also caters to Electric Cart accessibility for every line and/or ride.

Sunday, and first Park; Magic Kingdom!! But first; continental breakfast at the hotel! This was a great hot breakfast every morning before hitting the parks. 

We made it!! Magic Kingdom!! It’s everything you imagined and more. I remember going as a child, but being able to experience my kid’s going as a Dad was the absolute best experience! All those childhood memories raced back, and I got to remember my days at Disney through my kids’ faces. 

My wife went CRAZY for all the photo opportunities. Team Gleason’s Adventures also purchased the photo pass with our tickets so if my wife saw anyone with a green shirt and a camera, you can bet your biggest dollar she was making us stop and “Say Cheese!” I am glad she did! These memories together will last forever! 

We rode every single ride there was to offer at this park and saw the parade too!

Our favorite rides were: Space Mountain, Seven Dwarfs Mine Train, Big Thunder Mountain Railroad.

Tuesday, Day 2: Epcot

Our first ride was the Epcot Ball! It was so cool! Epcot was full of educational experiences and very interactive. We rode every ride here too thanks to our DAS Pass! Including Galaxy’s Edge! This evening we got to see the famous Firework Show and it did not disappoint!

Our Favorite rides at Epcot were Guardians of the Galaxy, Spaceship Earth, Soaring Around the World 

Wednesday, Day 3: Animal Kingdom

We have chickens at home and my sister and Brother In-love always send our family fun little packages in the mail. A few months back she sent us Chicken socks. Though they couldn’t join us, we absolutely included them on our trip! Today is Chicken sock day! We’re off to hang out with all the animals!

We were told to make sure to get on the Safari ride in the morning and in the evening to see different animals. And we absolutely did!!

Our Favorite area here was Pandora. We chose to spend our evening in this section to enjoy all the lights transforming into Avatar’s Pandora.

Thursday, Day 4: Hollywood Studios

It’s our last day at Disney World and we without knowing saved the best park for last.

Hollywood studios was filled with Character meet and greets and had the best rides! Again, we rode everything and some more than once!

Star Wars was our favorite section by far. My son who is 7 just saw the movies for the first time recently and loved them. He was in full character mode the entire time through this park! We loved the Rise of the Resistance ride and driving the Millennial Falcon! I think we rode each one 3 times.

Tower of Terror also never disappoints!

We want to plan to see DisneyLand park’s version of Star Wars. It was just that much fun!

We wore our Team Gleason Adventure shirts while we were there and while some people never asked; those that did made our whole day! Surprisingly a lot of people had never heard of Team Gleason or about Steve getting ALS. Sharing his story in combination with why we were at Disney really helped our kids tap into sharing about ALS and advocating. Seeing so much positive feedback and learning opportunities was one of the best experiences of our trip.

I was very surprised how smooth all the rides at Disney were.

It was nice to be able to enjoy all the parks without whiplash. ALS this far has affected my hands, arms, and into my neck. My neck is very sore often and I was worried about rides causing more spasms. Thankfully they did not.

We made so many unforgettable memories while at Disney World and we cannot thank Team Gleason enough for doing Team Gleason Adventures. During a time that’s so devastating, it’s important to live in these moments and look forward to making more. 

Friday: Onto our next stop! – Daytona Beach, Florida! Atlantic Ocean! I have lived on the Texas Coast and my children have too. I have stepped foot into the Atlantic Ocean as a kid, but never as an adult. We left Orlando and did just that! Buuuurrrr!! It’s colder than I remember! No time to stay- we have more destinations and just a week to see them all!

Onto- St. Augustine Florida! The Nation’s first established city! Also, the first ever lighthouse! We came to concur just that! The St. Augustine LightHouse! This was a lot of fun and something my wife wanted to do. 216 steps to the top at 165 ft high! We did them all! We made it all the way to the top just in time for my kids and I to look out.

Looking out, though, we had to race our way back down because the winds were blowing over 40 miles per hour and a lightning storm was blowing in. As soon as we made it back down the doors shut and it’s that time again! We loaded up and the storm hit hard! Off towards our next Stop- Washington, DC!

We stopped in South Carolina and then drove the day and stopped again in Virginia. 

Sunday– Bright eyed and Bushy Tailed we made it: Washington, DC is where “business is handled”- I wanted to show my kids where differences are made and turned into law at the Federal Level. I wanted to show them that getting to Washington, DC wasn’t as hard as it seemed. That if they chose to pursue something big; this is where they’ll need to be to make it happen. My wife is also big on advocating and fighting policy; this was a place I wanted to take her too.

Did I mention it started snowing?? I believe we hit snow on the ground in the Application Mountains crossing Virginia.  We are from Texas; it just doesn’t snow here. We have never been prepared for snow.  We had a mini snowball fight in the Smoky mountains on a highway scenic view stop.

No time to stay in D.C; we came to play! Off to Maryland for food! We stopped at Silver Café Dinner in Maryland and had the BEST shrimp and grits and Bison Turrizzo Rancheros! We had the best time here eating and enjoying ourselves. Far from Old and Boring!

We started thinking about where we were going next. While New York, New York was on the list. We weren’t sure if it would be our best move to make this trip. I wanted to drive the entire way. That was my goal. The traffic in Washington, D.C was hectic even on a Sunday. We decided to skip New York City and head towards Niagara Falls instead. Giving us plenty of time to enjoy and we could pace the rest of our driving too.

Have I mentioned the snow? Well, it’s still snowing. All our phone notifications were turned off during this trip and of course we weren’t paying attention to weather stuff. We were just in our own little worlds driving away. By this time, our phones started ringing and family was calling to check in on us. Seeing if we were getting into “The snowstorms.” What snowstorms? Not thinking too much about it; finally!!

We made it to Niagara Falls!!

Still Sunday; It’s nighttime, snowing lightly. All the falls’ lights were on, you can see the amusement across the border in Canada, it’s beautiful and breathtaking and SNOW!! The kids found more snow to play in! Not for too long though, we were not dressed or prepared for all the snow.

Monday Morning and Daylight savings! We are now 3 hours into the multiverse and as far north as you can be, there’s fresh powdered snow everywhere and more still coming down. Today’s going to be beautiful! We grabbed breakfast and headed off to the Falls. Getting there around 11 or so… we walked around, played in the snow, and admired the falls. We went onto the look out platform and saw the rainbow bridge on one side and the Falls on the other. There’s also a huge natural whirlpool we wanted to see too; we found it, and more fresh powder to play in. Another family snowball fight on the tops of Niagara Falls! Canada as our backdrop with almost no one else in sight! By the time we left it was already 4pm! Time flew by here! It was beautiful!

Now we are off to find my niece and meet my great nephews! That’s right!! I am also a great uncle! X3!

Riding Lake Erie all the way from Niagara Falls to Ohio and then down to Pennsylvania! At this time we look at the weather because it is really snowing now. When we looked, we realized we dodged a nasty snowstorm in New York City and somehow went above and around another one. Now we are just chasing this one to our next destination.

It’s Tuesday! Family day! We spent the morning enjoying family and since checking the weather now decided to go ahead and make our way back to Texas just in case. We climbed back down the smoky mountains passing through the opposite side that we came up on. We finally saw the sun again in Kentucky. Then, we crossed our own paths in Hot Springs, AR from a road trip we took in 2017.

We decided to sneak in and see my sister in Dallas for a pitstop on the way home which worked out perfectly since she had rescheduled tickets for a cute dinner show close by.

When we made it back home on Saturday; we had a huge surprise from my brother and my parents. They showed up while we were gone and cleared a construction pile of trash that was on my project list to do when I got home.

We did it! I did it! 15 days- 16 states- ALL 4 Disney Parks- 6 destinations and memories I could only dream of giving my kids!

Team Gleason: I know this program is to make the best out of this horrible disease. I don’t know if your Team realizes just how far you can take this opportunity and make a lifetime of adventures into reality! We could not have done this trip and accomplished what we did without your help!

From all our hearts to yours, Thank You!

No White Flags!