The past two years, I have created a video that was a review of the past twelve months that I delivered in June. I was not able to create the video in June 2025 even though I had written the script. I did share the script on CaringBridge in August and wanted to republish it here.

June 2025 Update

Hello everyone! It is time for my annual update video. The last twelve months are really a tale of two six-month periods, active and passive.

Active in 2024

In 2024, I really wanted to be more active, get out of the house and do more. With a lot of help from Sheila, my kids, and so many friends we did a lot!

Mikayla’s Wedding

The highlight of the year was the wedding of my youngest child, Mikayla! I was honored to walk her down the aisle and give her away to Gabe. I was able to pray and toast at the reception using my AI generated voice. Like at Kristyna’s wedding, we used a slide show for the father daughter dance so I wouldn’t ruin her dress or run over her toes with my chair. I am so happy for her and Gabe!

ALS bathroom humor

It wouldn’t be complete without an ALS story. We were at the wedding venue early for pictures. Because we were there all day, I had my boys bring more stuff with us just in case we needed it. You know the routine, if you don’t bring it, you’ll need it for sure.  One of the things we brought was my shower chair which I also use for a toilet. That meant we also had to bring the Hoyer lift.

As fate would have it, I had to have a bowel movement between the pictures and the ceremony, perfect timing actually. I told the boys to get mom, the shower chair, and the lift and make sure the bathroom was big enough for everything or would need to find a private or secluded space to use. The bathroom was big enough.

So, there we were, all the equipment, three helpers and me half naked in the middle of bathroom between the urinals and the stalls. With this disease, nothing is ever easy or fast.

We had a few guys who needed to use the restroom while we were there. Keep in mind we were in the middle of the bathroom and Sheila was there as well. Here’s what we found funny. Most of them were embarrassed or uncomfortable as soon as they stepped in the door and immediately turned around and left. A couple of them scooted by us to use a stall.

The funniest and most awkward for my wife was when someone slipped beside her to use a urinal. We all had a good laugh over that after getting over the surprise that it happened. Welcome to my ALS world!

Walks and races

Well, we did more than the wedding while we were in Minnesota. We participated in the ALS Walk at the Mall of America with family and friends. We were also able to see many friends and go back to Grace Church a couple of times. We really had a great time in Minnesota.

As I said before, my goal was to be more active and get out of the house. We did quite a bit, all things considered. We participated in the ALS Walk at Kentucky Horse Park. I checked out a couple of horses and didn’t run over the goat while we were there.

We went to the fall races at Keeneland with some friends and Sheila bet on horses. We won some and lost some.

More time with family and friends

We did a family vacation with all the kids and their spouses in Williamsburg Virginia. They taught me how to play cribbage that week. It was great to spend that time with everyone. I enjoyed our time together and look forward to doing it again soon.

We had a few friends visit as well. We were able to go out to a restaurant with them a couple of times.

We also visited the Ark Encounter with my parents.  We did quite a bit and we hosted Thanksgiving and Christmas. Overall, I accomplished what I wanted to do. Get and enjoy the world with family and friends and make some memories together!

My first pneumonia

Prior to Thanksgiving, I had my first bout of pneumonia and was in ICU at UK for a week or so. We started the week in the ER at Franklin County Regional Medical Center, but then I was transferred to the UK because that’s where most of my doctors are. Little did I know that this was a sign of things to come.

Passive in 2025

January 2025 started out OK. About a week into the new year, my oxygen levels dropped, and my heart rate spiked. We went to the emergency room in Frankfort again and were admitted to the ICU. When it looked like I would be there awhile, they started working on transferring me to the University of Kentucky again. Once they had a room for me, there was no ground transport available. I was airlifted via helicopter! That was a cool experience for me.

Life and death decisions

At UK, I was diagnosed with double pneumonia. During my stay, my breathing got worse. It got bad enough one day that coded and nearly died. They incubated me and put me on a ventilator. When I woke up, they were asking what we wanted to do next. Thankfully, Sheila and I had already discussed this. We had learned about tracheostomies and started the process in case it was necessary.

This is a personal and controversial decision in the ALS community. While it extends your life, it doesn’t stop the progression of the disease. Furthermore, it can complicate end of life decisions. We took all this into account and moved forward with our decision to proceed.

I would get my trach replaced twice in the hospital as we worked out the right size. After being there for a few weeks, we went home for one day just to go back to the ICU the next day still fighting pneumonia. I was in the hospital for over thirty days. During that time, we got set up and trained on our home ventilator.  We also tried out the Tobii Dynavox communication device.

Finally back home

When we finally went back home, we were all very happy. There was a learning curve with the new equipment and care needs, but Sheila got that sorted out quickly. She is a great wife and caregiver! She continues to tweak the process for both of us.

My niece, Tiffany, joined our caregiver team at this time as well. She has multiple years of experience. This has given Sheila a much needed break from me as I now require twenty-four hours a day care. This has truly been a blessing and answer to prayer.

A long recovery

After getting home from the hospital, I needed a few months of recovery. I spent most of my time in bed. I’m very comfortable here. For the first time in our married life, we have a TV in our bedroom. I watched a lot of shows and movies.

Beginning to get reengaged

I didn’t feel good on a regular basis until early May. Around that time, I started to feel better and started to reengage with the world. I am still working on my efficiency with my device and typing with my eyes. It is much slower, but it works.

I am thankful to God for the time I still have with family and friends. In spite of this horrible disease, he still shows his grace, which is more than sufficient and his overflowing love! God has a plan for me. I may not know what it is today, but I have hope in through faith!