Chapter 25: ALS Clinic

 The gold standard for ALS treatment is a multi-faceted ALS clinic. We are very fortunate that there is an excellent clinic just minutes from the house, at UT Southwestern. 

Patients are seen at the clinic every three months, with various specialists rotating through the room. This is so convenient, because the patient and family can just stay put. They are very efficient - while one specialist visits with the patient, the next is literally waiting in the hallway. Still, the process takes several hours.

Today was Jeremy’s 3rd clinic visit. I remember the first visit last August. He could still speak quite well. He walked easily. He was eating without much trouble.

Today, the doctor watched closely as Jeremy struggled to speak. He checked various reflexes and asked some basic questions and acknowledged that things have changed since the last visit.

Jess broached the subject of hospice with the social worker, and it was clear that it’s not too soon to start thinking about it. No decisions need to be made right away, but it will most likely be a good move at some point. 

Chapter 24: Progression

 ALS is both predictable and unpredictable. It’s a progressive disease but it can move slowly or quickly. It affects various muscles but can start in the legs, arms, hands, or vocal cords. For one friend of Jessica it started in the big toe.

When Jeremy was diagnosed (August 2025), a friend told me to expect periods of decline followed by “plateaus.” I was doubtful at the time because the progression had been so fast. We didn’t really see any plateaus for the first few months. After that, sure enough, there would be weeks when things seemed to stabilize. 

Unfortunately, once this disease takes hold there is no turning back. The plateaus offer a little respite but there are no upswings.

Eric Dane passed away today from ALS, and I watched his “Final Words” interview on Netflix. In addition to his sweet messages for his daughters (be brave, find your purpose, and live in the moment), it struck me just how rare this disease is (about 2 new cases per 100,000 each year in the U.S.) and how many people know little to nothing about it - including medical professionals. 

I hope that by writing about Jeremy’s situation I can encourage people to learn more. Even though it’s rare, each of these lives is precious. And each ALS story has profound lessons for the rest of us. 

Chapter 23: Determination

 Jeremy has worked in financial services since shortly after he graduated from high school. He spent a year in college but wasn’t sure what direction he wanted to take. Soon he made a connection with Edward Jones. Long story … he made other connections… and he ended up working for a well established investment firm in Dallas.

He was amazing with clients, providing clear guidance and calm assurance. He facilitated trades and opened accounts and navigated complex situations. 

But he didn’t have the credentials that might be expected for his position. In particular, he needed a “CFP” certification at one point. Not only that - the timeline for certification was approaching, and if he didn’t pass the required testing he would need to go back to the beginning and get his bachelors degree. Which would take years.

Obviously the pressure was on. He couldn’t afford a prep class but he got all the study materials and spent weeks and weeks preparing for the CFP exam. All on his own.

He passed. Amazing. And he continued to excel. He loved his job, and his clients and coworkers loved him deeply.

Chapter 22: Serviam

 Daughter #1 attended an amazing private high school, where the motto was “Serviam” - I will serve. This fits her personality perfectly. When she was in first grade, the teacher had a pile of scrap paper available for children who finished their assignments. #1 approached the pile and took a single sheet of paper. “You can take more,” the teacher told her. “That’s ok” said #1. “I want to be sure there’s enough for everyone else.”

Jeremy has been having a lot of trouble eating lately. He doesn’t have much of an appetite, and when he does try to eat, he often chokes. 

Tonight I made sausage pasta - one of his favorites. He ate quite a bit but had a little trouble finishing. Tom stepped in seamlessly and fed him the last few bites, making conversation about football and the Olympics.

No worries. No shame. No pressure.

Serviam.

Chapter 21: Speech or lack thereof

 Over the past few weeks, it has become more and more difficult for Jeremy to speak. For a while his speech was slurred but understandable. Then the slurring became worse and it was hard to understand him. Lately, the act of trying to speak is a huge challenge.

When he needs or wants to say something, he usually takes a deep breath and then says a word at a time. He is an articulate person but the process seems exhausting. I can only imagine the frustration.

He now has an eye gaze machine, which is basically a computer that can speak for him. He can program phrases or spell out sentences a letter at a time. Either way, it’s difficult to be part of a conversation. Plus, the machine has a limited number of voice options so he won’t really sound like himself. Still … I hope he will give it a try. When he has things to say, we definitely want to hear him. 

Chapter 20: Cards Against Humanity

 We are a family that loves to play games. Card games, board games, any kind of games. “Cards Against Humanity” quickly became a favorite.

Here’s how it works:

One person (the “judge”) draws a card and reads and incomplete sentence. The other players submit a card from their hand to make the funniest sentence possible. The judge then chooses the winner, who becomes the next judge.

Pretty much every time, Jeremy won every round. He would submit random, sometimes inappropriate responses that were just hysterical. We all laughed so hard - and I remember Jeremy covering his mouth with his hand and turning bright red because he was so tickled by his own humor. The rest of us just laughed along, at him and with him and because of him.