Mike (Me!) was diagnosed with probable ALS in January 2014. I was told that I would have about 3 to 5 years to live and in that time would lose the ability to speak, swallow, walk, bathe, feed myself or even brush my own teeth before eventually dying of respiratory failure. That was not a super fun day, but in my own defense I did ask for the doctor to shoot completely straight with me. On the drive home I was filled with anxiety, fear, apprehension, and thoughts of how so many other ways to leave this earth would be shorter and less harmful to my family.
However, a year or so later in early 2015 while speaking with my neurologist at UT Southwestern Medical Center in Dallas, she gladly started to explain that my version of ALS seemed to be a very slow progressing type! In the picture just to the left, that’s me at my daughter’s graduation from Texas A&M University in the spring 2019, a date that I was not sure I would make when she started. |
By early 2019, my upper body strength, hand strength, and the ability to hold my head upright for long periods of time had declined to a point where I was unable to do “normal” things like open a water bottle, eat, re–dress in the bathroom, etc. without help. Although my doctors had been telling me for at least two years to retire, my brain could not process living without the identity of having a job.
The short version is that with help from my wife Linda who worked in the same office as me, I was able to continue working until the fall of 2019 when I finally retired. Just prior to my retirement, in the summer of 2019, Linda and I were blessed to join the National ALS Association in Washington DC to advocate for ALS issues; chief among them the ALS Disability Insurance and Access act of 2019.
A very special thanks to my CEO at the time, Steve Little (CEO of National
Roofing Partners and Head Coach of K Post Roofing and Waterproofing here in the
The short version is that with help from my wife Linda who worked in the same office as me, I was able to continue working until the fall of 2019 when I finally retired. Just prior to my retirement, in the summer of 2019, Linda and I were blessed to join the National ALS Association in Washington DC to advocate for ALS issues; chief among them the ALS Disability Insurance and Access act of 2019.
A very special thanks to my CEO at the time, Steve Little (CEO of National
Roofing Partners and Head Coach of K Post Roofing and Waterproofing here in the
DFW area), not only for sending the two of us out there but for providing contacts who could help us navigate Capitol Hill and educate us in the process – without the help of those folks it surely would have been much more difficult.
We left DC feeling that we had made a direct impact with Congress and hoped for the best. Thankfully, for all ALS patients the bill became law on December 22, 2020, granting immediate Medicare access to ALS patients the moment they become eligible for SSDI. This was a huge win for the ALS Community because it eliminated the five-month waiting period which was in place at the time. While in DC however, we met several folks with bulbar onset of ALS. As opposed to my limb onset, the bulbar onset essentially deleted their ability to speak – for some of them almost overnight. This experience above all others motivated me to eventually start Help ALS Speak. |