At the end of May 2024, I went on full time disability. For the first time in my adult life, I was not fully employed. I remained engaged as a Microsoft MVP on data platforms by creating a video series on Microsoft Fabric called “Fabric 5”.
The series focused on key architectural principles to be considered when implementing Fabric in your organization. This includes medallion architecture options, security considerations, and business continuity gaps. I started the series using my voice even though I would lose my breath. Along the way, I would start talking with my mask with the help of captions. Eventually, I would use an AI generated voice from Team Gleason to record the videos. I would close out 2024 with a four-video series on business continuity.
That brings me to this year. I started the year in the hospital for most of January and the start of February with pneumonia and breathing problems. During my stay, I had to get a tracheostomy which took away my ability to talk because I also require full time ventilation. After I got home from the hospital, I needed a few months to recover. ALS sucks! As I started getting “back on my feet,” I have worked with my eye gaze system from Tobii Dynavox to communicate, work on my computer, and type. I am using that system to create this blog post.
Eye gaze keyboard, I type one key at a time.
Now what?
I am going to try to write a couple more blog posts. I need to see if I can create videos. I am working through my new normal and not overextend myself as fatigue is a real issue with ALS. I am excited to contribute as I can. As always, I am thankful for the support and prayers from the data community.
As of June 1, I am no longer an employee at 3Cloud. I am now officially on long term disability. This marks the first time since I graduated from high school that I am not working full time in some capacity.
A Little History
I started working with technology around 1995. My career started with Microsoft Access with which I built a warehouse management solution for Bethany House Publishers.
I was recruited from there to work with Magenic as a VB developer. I learned about SQL Server and fell in love with databases. From there I learned how to use Analysis Services and really enjoyed working with MDX. That is right, I actually like working with multi-dimensional models and with MDX. I continued to work with these tools and built up a good reputation and skillset in that area. Star schemas and multi-dimensionality just made sense to me. During my time at Magenic, I developed my technology leadership and presentation skills. I became a Practice Lead and drove business and technical expertise in the data (SQL Server), collaboration (SharePoint), and integration (BizTalk) areas.
My time there was split around a stint at Xata, a transportation management company. It was here that I created Data on Wheels. This became the brand I would use for the next 14 years to disseminate technology learning in data and business intelligence. I would eventually move over to Pragmatic Works to continue my focus on data.
While I was at Pragmatic Works, I started to specialize in presales and would eventually lead that team. I would go on to lead the entire consulting organization. During that time, I would spearhead the move to Azure and cloud data work. We would eventually be acquired by 3Cloud and grow their data team substantially. I worked closely with management to help grow the data business including building up our Microsoft Fabric expertise.
In my second year at 3Cloud, I was diagnosed with ALS. This would change my career and life in so many ways. The company has treated me very well given this situation. They have given me great support through this journey right up to the very end of my time there which was at the beginning of June 2024. I am happy that they stood by me through all of this. I wish them the best as they continue to grow and become the best Azure company in the world!
What’s Next?
In the next phase of my journey, I plan to continue to give back to the data community for as long as I am able. I will try to speak when I can, which will depend on how I am doing and how I am sounding. I also plan to continue recording Fabric videos. My hope is to do some additional content on accessibility with Fabric including how to use various features to support development in practical ways (I will not be typing a lot of code). I am going to work with CoPilot in the various tools such as Fabric, M365, and Windows and share how it can help someone like me continue to be productive in a work setting.
I will continue to educate anyone who will listen on ALS and how to keep living with it and working with it. As this disease continues to ravage my body, my plan is to continue to share how to work with it and how to enjoy the best life you can while you can!
I will not give up!
I will not give in!
I look forward to sharing journey with all of you and I hope you enjoy it with me. Thank you for all the support through the years and all the support yet to come.
For I know the plans I have for you,” says the LORD. “They are plans for good and not for disaster, to give you a future and a hope.” – Jeremiah 29:11 (NLT) (emphasis mine)
Over the past couple of months, I have started losing my ability to talk without a mask. One of the effects of a disease, ALS, is that I am losing the ability to breathe without support which also impacts my ability to talk without my ventilator. This past weekend I did my first speaking engagement at Derby City Data Days in Louisville, KY. As the saying goes, “It takes a village.”
As many of you know, I have been producing a video series called Fabric 5 which contains five minutes snippets about various Microsoft Fabric architectural topics. I was going to use some of that content to create a slide deck about medallion architectures in Fabric. As the day got closer, I was concerned I would not be able to maintain the ability to speak during an entire presentation in my condition. My wife and I thought that we could use my videos for the presentation, so we recruited my son, Alex, who does video editing, to put together the videos for the presentation. That only left the intro slides and the ending slides to be covered by me or someone else.
My daughter, Kristyna, was presenting right before me in the same room. She and my wife managed most of the introduction including the sponsor slides and the user groups. I was able to kick off with a microphone that was provided by the venue through Redgate. Then we kicked off the video and took questions during the session. I was able to answer questions with the help of my wife and using the mic provided in the room. We wrapped up with a final Q&A and a couple of references to help people in Fabric.
A quick video from the session
Overall, this was a wonderful experience for all of us and I appreciated the patience of everybody in the room as we worked through this process for the first time. Here are the Fabric 5 videos that were used during the presentation so you can follow up with it later and references are down below from the end of the presentation. I would like to thank the organizers – John Morehouse, Josh Higginbotham, Matt Gordon – once again for the support and the help as I presented masked up for the first time!
During the after party my ventilator ran out of power and my car charger did not work. This presented a problem because the trip home was over an hour. When we went out to the car, we had a moment of panic because the ventilator ran completely out of power. We went back to the bar where we were at for the after party to plug in, but the charger wouldn’t work. I was without the ventilator for 15 to 20 minutes while they troubleshot the issue. We started to think that they may have to call 911! However, this issue was resolved due to a loose connection. I must thank all of individuals there that helped including John Morehouse who went to get a battery backup system to make sure I could make it home and to my son-in-law who went to our house to bring us our backup battery generator as well to help us get home.
Working with ALS is not always easy and all the help from everyone around me is genuinely appreciated!
The 14th annual Ability Summit is a global event that I attended a few weeks ago. It is hosted by Microsoft, and it presents the latest technology innovations and best practices for accessibility and inclusion. The event has three main session tracks: Imagine, Build, and Include. Each track examines different aspects of how technology can enable people with disabilities and make the world more inclusive. The event is free, and anyone can register online to attend. All sessions are recorded and can be watched at any time on demand.
Ability Summit 2024 Highlights
As we think about our enduring commitment and goal at Microsoft, which is to build that culture of accessibility and embed it into everything we do, grounded always by the insights of people with disabilities. – Jenny Lay-Flurrie
In the first keynote, Microsoft CEO Satya Nadella and Chief Accessibility Officer Jenny Lay-Flurrie talked about how AI can remove obstacles and create more accessible experiences, while also addressing the challenges and concerns of responsible AI. The keynote showed several examples of how AI can help people with disabilities, such as voice banking for people with ALS, descriptive audio for people with low vision, and Copilot for people with diverse speech patterns. It was very impressive to see Team Gleason featured as a partner with Microsoft to work on AI to help the ALS community preserve their voice.
Team Gleason and Microsoft Team Up to Give an ALS Person His Voice Back
As a platform company, we have to absolutely lean into that and make sure that everything we’re doing, whether it’s Copilot and Copilot Extensibility or the Copilot stack in Azure is all ultimately helping our ISVs, our customers, our partners, all achieve their own goals around innovation, around accessibility. – Satya Nadella
Build Session: Bridging the Disability Divide with AI
The conference had many sessions and keynotes, but this one about the disability divide and AI was very interesting to me. These are three main points I learned from this session: 1) how people with disabilities are benefiting from AI in their personal and professional lives; 2) advice on how to begin and advance the AI journey with accessibility as a priority; 3) the significance of accessibility as a basic value for developing technologies that enable everyone.
This session also provided some resources and opportunities for us to learn more about AI and accessibility, such as the Accessibility Bot, which is a chatbot that can answer questions about Microsoft’s products and services regarding accessibility topics; the AI Studio, which is a platform that allows users to explore and build AI applications using various cognitive services and SDKs; and the AI Platform Team, which is a group of developers and researchers who work on making AI more accessible and inclusive.
In Real Life
I belong to the ALS community (I have ALS), and I rely on a lot of accessible technology both hardware and software to accomplish work. I used a combination of Voice Access in Windows 11, a Stream Deck foot pedal, a foot pedal joystick on my wheelchair and Microsoft 365 Copilot to write this blog post. Voice Access helps me with dictation and specific commands like selecting paragraphs or capitalization. A Stream Deck allows me to do backspace and deletes. A foot pedal joystick acts as a mouse. Copilot assists me with summarizing and rewriting content. As you can tell, we need a whole set of tools to suit our needs, and there is no single tool or method that works for us. I’m excited to see how AI will enhance accessibility for all of us. My goal is to keep sharing the tools and techniques I use to live and work with ALS through my blog and YouTube channel.
2023 was another transition year as I continue to navigate my ALS with work. It has become harder to write or at least more work is required. I use Voice Access day to day which allows me to operate my system and dictate everything from messaging in Teams to documents and blog posts such as this. While the technologies allow me to continue to contribute in a variety of ways they are not without their flaws. I find myself doing a lot of correction or relying on friends and family to correct and modify documents and PowerPoints in particular. Despite these limitations, I continue to find ways to contribute and be productive at work and in the community when I am able.
Where I Am Today
At the beginning of the year, I was using a smaller wheelchair but was able to get around well and was still able to go to Usergroup meetings and travel the country. My wife and I made a trip to Disney in May of last year. This was a great opportunity to experience what Disney had to offer for those of us with the accessibility issues. I will tell you they do a great job! As a year progressed, I started to lose more functionality in my legs. It was particularly bad after surgery in June. At that point it became increasingly difficult for me to participate in events further away in the region.
I now have a great new power chair which allows me to get around easily and we can use a mobility access van as well. There are still limitations on my ability to travel but we were able to make it out to Kristyna’s wedding in October using these tools.
The other big change for me has been the effect on my breathing. This has limited my ability to talk in long sentences or for long periods of times without requiring a breathing break. Because of this new limitation, I have begun limiting my external speaking and webinars because I would not be able to maintain a long session over 15 minutes or so. As you can imagine this is very disappointing for me as I spent much of my career in the public speaking arena.
I mention all this not so that you can feel sorry for me, but so that you can understand why you may see me in different circumstances or contributing in different ways I’ve never done before. I have always loved working in the community and wish to do so where I am able to. And more about that next.
Contributing to YouTube
This year we launched the new YouTube channel for Data on Wheels. We launched this channel to give me a voice to support some of the working with ALS content I have been creating. My first content was related to using Voice Access. This is a series of videos that introduced users to how to use Voice Access in practical ways. It has a particular focus on enabling users like me on the capabilities on Voice Access. I use Voice Access for most of my navigation and dictation needs in the day-to-day work. I do however lean on Microsoft 365 dictation for longer content creation such as this blog post. Someday I hope to do all of it in one tool.
One of the big contributions I wanted to make was a series of discussions on Microsoft Fabric architectural decision points. That was how the Fabric 5 was born! I was able to maintain about 5 minutes of good conversation regarding Fabric and the various architectural decisions customers should make. This is allowing me to continue to contribute to the community despite the disabilities in front of me. I look forward to contributing even more this upcoming year as Fabric continues to change the landscape of data analytics as we know it.
Spirit of 3Cloud
This year was capped off with my company awarding me the Spirit of 3Cloud award. This award reflects the contributions I have made to the company while battling my disability but at the same time providing support for other team members and growing our organization. I believe this award represents my ability to continue to encourage others to give their best in their lives and in work. Thank you to all of those who continue to support me in this journey, and I hope to continue to represent 3Cloud well throughout it all.
What’s Next for Data on Wheels
This year I am handing the primary reins all the Data on Wheels blog and YouTube channel over to my daughter, Kristyna, as well as our Data on Rails program for new bloggers. I look forward to seeing great things from her as she continues to grow in her experience and community involvement. You should continue to look for great content from her as she takes the primary role and voice for Data on Wheels. I have truly enjoyed contributing to the blog for over 12 years and will continue to contribute as I’m able to both the blog and YouTube channel.
I am not totally getting out of all of this but want to express my sincere thanks for all the support you all have given us through the years. As I continue to work through my ever-changing disease, your support continues to be appreciated and I will keep you all up to date.
Data on Wheels 