I was diagnosed in November of 2012. For about fourteen years prior to that, I knew something was “wrong.” I got a second opinion. Yep. Confirmed by her, too. ALS.I have what’s called “Bulbar Palsy.” The “bulb of the brain” is where the speech and motor-skills are controlled. My speech is really what captivated my attention. I was in radio for about 15-years, then, on the record-company side of things as a record promoter…so, for a guy that’s always made his living talking…this is really a difficult pill to swallow.
Singing used to be such a joy to me. Now, I can’t. Not even a little, really. Because, I can’t control my breath…I can’t hit or hold a note. Singing was a BIG part of my life…now, it’s gone. I miss that, terribly.
So, you can understand why preserving some semblance of my voice was so important to me. It was Team Gleason who funded the voice banking process and the creation of my digital voice.
I look around us at an ALS clinic and I see people in wheelchairs, motorized scooters and even on gurneys with assorted breathing and talking devices…and I’m seeing a possible glimpse into my future. But, the individuals who work at Team Gleason are working hard to change lives, but more importantly, they remind us that we are not alone when dealing with this “dis – ease.” Team Gleason has been instrumental in helping to create a new life for me that mirrors my old life as closely as possible.
OH! Speaking of which, Team Gleason is in the process of helping to fund a “Bucket List” trip for me, too!
This is why your donation dollars are so important. Your donation ensures the services and
programs provided by Team Gleason are able to continue to be provided for those who are
living with ALS. Your donation ensures people like me can retain some aspect of who they were before ALS. Most importantly, your donation funds the ability to keep those living with ALS connected to the friends and family who support them every day.
Funny observation. Not “Ha-Ha” funny…but, “Hmmm” funny. I never got angry, or asked “Why ME?” when I got my diagnosis. I never asked “Why me?” when the GOOD stuff happened…so, why should I, NOW? During one of my visits to the ALS Clinic, my neurologist had one of her interns observing…he said, “You sure seem to have a good attitude about it all.” I responded with, “Well, I could get angry about it…but, when I wake-up tomorrow, I’ll still have it…so, why expend the energy? We can’t control WHAT happens to us…only, how we REACT to it…I chose to react with grace and choose to be happy.” Quite frankly, it is a LOT EASIER to do with Team Gleason’s friendship and support!
Thank you so much for your support,
Joe R., Baton Rouge, LA
