My ALS journey began in 2014 with unusual cramping and muscle twitching. After a series of escalating tests, I received my diagnosis. Life since then has been a whirlwind of changes, some wonderful, some less so. A significant moment was the birth of my daughter, where my condition allowed me enough strength to support my wife during this amazing time in our lives. The difficulties brought on by the disease have been manageable thanks to the unwavering support of healthcare professionals, caregivers, my loving family, and the ALS Society.
Before my diagnosis, I was an avid skier and mountain biker. The need to adapt to my changing physical abilities led me to new interests. I now enjoy computer programming, 3D computer modeling, and electronics. This need for swift adaptation is a constant race to stay a step ahead of disease progression. These skills have allowed me to 3D print custom parts and create tailored solutions to operate my power chair and stay connected with my devices. I am fortunate to have patient caregivers and family members who are always ready to lend a hand, quite literally, to make this journey easier. Their support keeps me intellectually engaged and creatively fulfilled.
The most rewarding part of my daily life, however, is spending time with my family and being the best father I can be to my daughter. I love helping her with her schoolwork and having fun playing with her. She often has me playing Roblox, and she doesn't care one bit that I have to play using just my eyes. It's a wonderful journey to watch her grow and learn, and I feel incredibly fortunate to share these moments with my wife Lindy, who is simply amazing.
My current projects include improving my text-to-speech app, which utilizes a fantastic service for transforming text into speech. This service can create or even clone your voice. I believe that the generated voice sounds very similar to my healthy voice. I'm also experimenting with OpenAI to enhance my communication speed and naturalness. Another project is aimed at streamlining the process of using eye-tracking VR to operate my chair outdoors in bright sunny conditions. As of now, I rely on a caregiver to put it on and take it off, but I'm working on making that process more independent.
The ALS Society has been crucial for me and my family, providing up-to-date research information, timely advice, and much-needed equipment. The ALS Society is a truly wonderful organization, and I am extremely grateful to all the generous supporters of the society.
Despite the uncertainties of living with ALS, I remain hopeful and committed to making each day count. My plans include further exploring my new hobbies, spending quality time with my family, and advocating for ALS research. I believe that sharing my story and raising awareness will contribute to the ongoing fight against ALS.
I hope that my story can inspire others facing similar challenges and contribute to raising ALS awareness.
Sincerely,
Mike