I have been living with ALS for the past two years. I was diagnosed in September 2022 but had my first symptoms and started researching what was going on in July 2021. As I begin to understand my diagnosis more, I realize that this is a progressive disease, and my needs and situation will change over time. In my situation, I lost the use of my arms and hands first and I’ve begun to lose functionality in my legs and torso over the past few months. To learn more about my journey to this point check out this video on YouTube which tells my personal story.
Launching the YouTube Channel
Now that we’ve mentioned YouTube, Data on Wheels is launching its YouTube channel focusing first on my ALS story. While this YouTube channel will support technical content like the Data on Wheels and the Data on Rails blogs, it will also support ALS awareness and accessibility technology.
I realized early on that a blog post was not the best way to share the story or tools that I use while working with ALS. We will have a couple of playlists that are directly related to this part of my story. We will have a playlist called Living with ALS that focuses on my personal journey and various things we’ve learned or experienced in the process. We will also have a playlist that’s called Working with ALS that will focus on the tools I use to keep me working and how I keep working as my disease progresses.
While I wish we could have started this much earlier, the disease itself has slowed my ability to complete some of these tasks as quickly as I wished. It is with a lot of help from my family who have supported me through video editing, content support, and motivation that we’ve been able to get this launched. I hope you enjoy it for what it is, and I look forward to having a number of you follow and learn more about accessibility.
Global Accessibility Awareness Day 2023
I had the opportunity to work with the Voice Access team from Microsoft on a story video that was used on Global Accessibility Awareness Day, May 19, 2023. I am truly impressed with the work Microsoft has done with Windows and Office to create more accessible experiences for those of us who need help doing our day-to-day job. When I think about how Voice Access has truly helped me be productive in my day-to-day work needs such as IMs in Teams, it was a pleasure to work with them to do a video to promote this tool. You can check out the video in the Voice Access area here. You can also learn more about the other accessibility options available in Windows 11.
Supporting the Cause -ALS Walk Lexington, August 2023
As part of the effort we’re doing around ALS Awareness this month, Data on Wheels is the team name for our team that will be doing the ALS Walk in Lexington KY this year. This is an opportunity for us to do our part to help the local community continue to do great things for the ALS community. Check out our team site and support if you can. Every little bit counts. If you’re in the area and want to join us for the short walk that happens in August feel free to sign up on the team.
3Cloud – Inclusive and Supportive Workplace
I was employed at 3Cloud when my disability first surfaced. As you can imagine, it was an emotional roller coaster and I really needed to determine how much it would affect my ability to do work for the company. As you have seen above or in one of my stories, this disease first affected my hands and arms and my ability to type. Without knowing the speed or rate of the disease and the impact to my current workload, I was able to work with my bosses to find a good place for me in the company which allowed me to contribute while I sorted this out. With their help, I have been able to find a place to continue to contribute and participate in the technology that I love to work with. For example, just this past week, Microsoft released a new product called Microsoft Fabric that I’ve been working with them and our team on to understand how to best work with it in our field. The company has trusted me with this and other initiatives that have allowed me to continue to be productive and generally contribute to the growth and success of 3Cloud.
Wrapping It Up
ALS has changed a lot about how I work and how I view life. I hope that what I share about what I learn helps others in similar situations. I will continue to be as active as I can both through work and in the community. Each day is a new day. Some days bring good things and some days bring bad, but God is in control of it all. Thank you for your continued support!