February 2023
by Craig Fuchs
To the Entire Team Gleason Organization:
Well, we are back home from an amazing weekend in Phoenix where we were able to attend not only the actual Super Bowl game, but we were able to enjoy so many amazing sites and sounds throughout the entire weekend. And, we brought home a win!! How ‘bout them CHIEFS!!!
I really don’t even know where to begin and how to adequately express my gratitude for this amazing trip. I am going to just start typing my thoughts and I am sorry if I get long-winded. I have so much to say.
A little background. Prior to my diagnosis, my family and I had been incredibly blessed, because of my job, that we had done a good deal of traveling internationally. I have been on 20 international trips to 25 countries and as a band/orchestra conductor, I have conducted on three continents. To say our lives have been blessed by God would be an understatement. I have lived 100 years of life in my 60 years on this Earth.
On February 23, 2022 our lives changed. With my [ALS] diagnosis, we had to stop and rethink our entire future as a family. Probably like most PALS when they find out their diagnosis, I spent about two weeks sitting in my chair crying, planning my funeral, and getting my financials in order. It was a brutal two weeks.
Then, one day, I decided I was going to do my best to move forward. While I had some difficulty walking (my ALS was limb onset in my right leg), I could still walk, talk, eat, swallow, breathe, move my hands and arms. So, I had a limp. Big deal. This wasn’t going to stop me from living my life. I actually traveled to Europe three times in the next 6 months for various reasons. I continued to play golf (although my drives sure didn’t go as far), and I got out of bed every day determined to still live my life to the fullest and to continue on.
Now, almost a year later, I am struggling a bit more to walk. I have to use a rollator around the house for stability, but while there is weakness in my left leg and right arm, I am still able to get around ok with adaptive assistance. I am not sure I will be able to play any more golf, but that is ok. I have played plenty of golf in my life and I will forever cherish my time on the course with my buddies.
I continue to thank God each and every day for what he has given me in my life and for helping me to be hanging in there with a seemingly slow progression. I am doing all of the usual things to fight the disease. Rilutek, Radicava, drug trials and all kinds of other meds and vitamins. They have all become part of my daily life. I have an incredible support system and so many friends who are thinking about me and praying for me every day. I have an amazing family, led by my wife and caregiver, Kelly. She is truly amazing. My personal mantra is “Go Forth and Conquer” and I try to live that each day.
This brings me to this past weekend. I think your organization knows that we were selected as the family from Kansas City to represent Team Gleason at the Super Bowl. This is just crazy. What a whirlwind of a week. We found out on Sunday, February 4th that we were going. After an intense week of planning, we were on our way. The trip was truly incredible in every way. We were able to experience the total vibe of the event since we were out there a couple of days early. We were able to catch up with some friends who live out there that we hadn’t seen for a couple of years. We were able to meet up with some friends from the Kansas City area who were also there for the game, but that we hadn’t seen for over 10 years. We went to the NFL Experience and NFL Live area. We did our best to take it all in.
Most importantly, we were able to meet the other two families who were sent by Team Gleason. This was something I was very much looking forward to. As you all know, unless you live in this environment, you really don’t know the full effect of what the disease brings to you and your family. Yes, the game was amazing, our seats were amazing, and the entire weekend was something we as a family will never forget. But I am sure you will understand when I say that meeting and interacting with those other two families was an equally meaningful aspect to the trip.
One other thing I would like to mention is that Team Gleason contacted me before we went and asked if I could maybe use some help with a mobility device. We were struggling in our conversations to figure out how best we could navigate the situation with the devices I had. Another huge blessing from God dropped right in our laps when you all decided to provide me with a loaner Pride Carbon portable power wheelchair for the weekend. I can tell you that we would have never, ever had the same experience without that device to get me around. It totally freed us up to do so many things that simply would not have been possible or would have created a significant burden on my family. Amazing. (Side note from Team Gleason: Thank you to Pride Mobility for providing the Jazzy Carbon loaner for Craig’s Adventure!)
So now that you have a snapshot of our situation and the weekend, I will start with the thank you’s. Again, there is no way in the world I can possibly begin to share the depth of my gratitude for Team Gleason. The support you all provide and the incredible love and generosity you exhibit is beyond belief. The flights, the lodging, the game tickets, the wheelchair….all because of your mission to ensure that people with ALS can continue to live the best quality of life possible, despite the many challenges the disease presents. Mission Accomplished!!!
Emily was amazing. Great communication and clarity in what was going on. Helped us in so many ways to be prepared for what was going to take place once we hit the ground. She interfaced with our local ALS.org chapter to problem-solve and make sure everyone was informed and in the loop. She helped us get connected with the other families. Bravo to Emily for the outstanding work she did!!
I also want to thank Mary who I have now been in contact with about returning the power wheelchair. She is right on top of things and is helping us work through me getting my own power wheelchair through the grant process now that I see what it can provide me with regard to mobility. Kudos to Mary!!!
I should also interject at this point that soon after my diagnosis, I was able to get my voice banking done through the generosity of your organization. I did not know that was even a thing, but I am all set now should I lose my ability to speak. Thank you!!!
After researching your website, I know there are many, many more of you on the team who have specific roles that contribute to the overall success of the foundation. Even though my recent trip only touched a few of the staff members directly, I know full well how incredibly important each and every one of you are to addressing the mission and values of the organization. Bravo Tutti for each person associated with this amazing Team.
I had recently hit a significant stagnation point in my journey where I just didn’t know what I am supposed to be doing with my life. I really need to find my purpose. I was a teacher/professor for 37 years prior to diagnosis so I was very involved in making a difference in people’s lives. I miss my interactions with my students so very much and I have a definite hole in my heart since I am no longer able to mentor and guide my students in their lives.
This adventure provided by Team Gleason reinvigorated me to work harder to move forward personally and find a purpose that I can serve. I am not sure what it is just yet, but I am determined to find a way to re-engage my passion for helping others in life.
I can only hope that this message at least begins to touch the surface of my intense gratitude to you all. There is simply no way to put into words what my heart is feeling. May God shower blessings on each and every one of you and continue to bless the work you are doing for our ALS community.
NO WHITE FLAGS!!
With deep love, respect, and gratitude
Craig Fuchs
Thank you to the NFL Events Department for providing the Super Bowl tickets and Andrew Jo, National Football League Sr. Manager of Retired Players Program, for coordinating the experience.
